interagency autism coordinating committee full … · missing children and adults on the autism...

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INTERAGENCY AUTISM COORDINATING COMMITTEE

FULL COMMITTEE MEETING

WEDNESDAY, JULY 26, 2017

The full Interagency Autism Coordinating Committee (IACC) convened in Bethesda, Maryland, at the National Institutes of Health, (NIH), 31 Center Drive, Building 31, C Wing, 6th Floor, Conference Room 6 at 9:00 a.m., Joshua Gordon, M.D., Ph.D., Chair presiding.

PRESENT:

JOSHUA GORDON, M.D., Ph.D., Chair, National Institute of Mental Health, (NIMH) National Institutes of Health

SUSAN DANIELS, Ph.D., Executive Secretary, IACC, Office of Autism Research Coordination (OARC), NIMH

DAVID AMARAL, Ph.D., University of California, Davis (UC Davis) MIND Institute

JAMES BALL, Ed.D., B.C.B.A.-D, JB Autism Consulting; Chair, Autism Society Board of Directors

DIANA BIANCHI, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development

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PRESENT: (continued)

LINDA BIRNBAUM, Ph.D., D.A.B.T., A.T.S., National Institute of Environmental Health, Sciences and National Toxicology Program, National Institutes of Health

JOSIE BRIGGS, M.D. (representing Francis Collins, M.D., Ph.D.,) National Institutes of Health (NIH)

JUDITH COOPER, Ph.D., (representing James Battey, M.D., Ph.D.), National Institute on Deafness and other Communication Disorders (NIDCD)

SAMANTHA CRANE, J.D., Autistic Self-Advocacy Network

RUTH ETZEL, M.D., Ph.D., Office of Children’s Health Protection, Environmental Protection Agency (EPA)

TIFFANY FARCHIONE, M.D., Division of Psychiatry Products, U.S. Food and Drug Administration (FDA)

LAURA KAVANAGH, M.A., Maternal and Child Health Bureau, Health Resources and Services Administration (HRSA)

DAVID MANDELL, Sc.D., Center for Mental Health Policy and Services Research, University of Pennsylvania

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PRESENT: (continued) MEGHAN MOTT, Ph.D. (representing Walter Koroshetz, M.D.), National Institute of Neurological Disorders and Stroke, (NINDS) National Institutes of Health (NIH) KEVIN PELPHREY, Ph.D., George Washington University and Children’s National Medical Center EDLYN PENA, Ph.D., California Lutheran University LAURA PINCOCK, PharM.D., MPH, Agency for Healthcare Research and Quality, (AHRQ) LOUIS REICHARDT, Ph.D., Simons Foundation Autism Research Initiative ROBERT RING, Ph.D., Vencerx Therapeutics (attended by phone) JOHN ELDER ROBISON, College of William and Mary MARCELLA RONYAK, Ph.D., LCSW, CDP Indian Health Service (IHS) Headquarters STUART SHAPIRA, M.D., Ph.D., Centers for Disease Control and Prevention (CDC) MELISSA SPENCER, Office of Disability Policy, Social Security Administration (SSA) JULIE LOUNDS TAYLOR, Ph.D., Vanderbilt University

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PRESENT: (continued) LARRY WEXLER, Ed.D., U.S. Department of Education (ED) NICOLE WILLIAMS, Ph.D., U.S. Department of Defense (DoD) (attended by phone)

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TABLE OF CONTENTS

Welcome, Introductions, Roll Call, and Approval of Minutes ......................................... 8

Joshua Gordon, M.D., Ph.D., Director, NIMH and Chair, IACC

Susan Daniels, Ph.D., Director, OARC, NIMH and Executive Secretary, IACC

Mortality and Risk in ASD Wandering/Elopement: 2011-2016 ....................... 18

National Autism Association

Lori McIlwain, Co-Founder and Board Chair

Injury Prevention Strategies for Wandering in Families of Children with ASD ................................................................................ 42

Interactive Autism Network

Paul Lipkin, M.D., Director

Committee Discussion of Wandering Presentations ................................................................... 68

Update from the HHS Office of the National Autism Coordinator ............................... 97

Thomas Novotny, M.D., Deputy Assistant Secretary for Health and National Autism Coordinator, Department of Health and Human Services

Committee Business ................................................... 114

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Susan Daniels, Ph.D., Director, Office of Autism Research Coordination, NIMH and Executive, IACC Joshua Gordon, M.D., Ph.D., Director, National Institute of Mental Health (NIMH) and Chair, IACC Public Comment Session ......................................... 181 Joshua Gordon, M.D., Ph.D., Director, National Institute of Mental Health (NIMH) and Chair, IACC Karen Mowrer, Ph.D., Science Policy Analyst, Office of Autism Research Coordination, NIMH Commenters Thomas Frazier .............................................................. 182 Carol Weinman ................................................................ 190 Mary Jo Lang ................................................................... 199 Margaret Gautier ........................................................ 233 Autism After 21 ........................................................... 245 Madison House Autism Foundation JaLynn Prince, President and Founder Andrienne McBride, Executive Director Desiree Kameka, Director of Community Education & Advocacy

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Committee Business Continued ......................... 298 Susan Daniels, Ph.D., Director, Office of Autism Research Coordination, NIMH and Executive, IACC Joshua Gordon, M.D., Ph.D., Director, National Institute of Mental Health (NIMH) and Chair, IACC Round Robin ..................................................................... 366

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PROCEEDINGS

DR. JOSHUA GORDON: So, welcome to the

summer meeting of the Interagency Autism

Coordinating Committee. Those of you who

don’t know me or are watching on the web, I

am Joshua Gordon. I am the Director of the

NIMH and the chair of the IACC. It is my

pleasure to welcome you all. We are going to

have a roll call in a few moments.

Before we do that, I want to introduce

two newish members of the committee. First of

all, Marcella Ronyak, welcome. Dr. Ronyak is

the Deputy Director of the Division of

Behavioral Health at the Indian Health

Service. Could you just say maybe a few words

about your agency?

DR. MARCELLA RONYAK: Yes. Good morning

and thank you very much. My name is Marcie

Ronyak. I am a member of the Confederated

Tribes of the Colville Nation, up in

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Washington. So, I literally moved from

Washington to Washington. I am the Deputy

Director of Indian Health Service, Division

of Behavioral Health.

IHS’ mission is to raise the physical,

spiritual, mental, and social wellbeing of

American Indian and Alaska Natives. Part of

that is working extremely hard with our

partners and in collaborations and looking at

various avenues of how we can increase access

to services, how we can increase education,

training, consultation. We do have our Tele-

Behavioral Health Center of Excellence that

provides education, training, and

consultation to all IHS facilities, tribal

and urban facilities, to be able to assist us

in meeting that mission.

Thank you and I am very honored to be a

part of this.

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DR. GORDON: Thank you and welcome. Also

Dr. Laura Pincock, a Pharmacist Officer for

the Agency for Healthcare Research and

Quality, officially joined the IACC in

January, but you didn’t have a chance to

introduce yourself. Why don’t you go ahead

and do that, please?

DR. LAURA PINCOCK: Good morning,

everyone. I work at the Agency for Healthcare

Research and Quality. We are a small agency

in the Department of Health and Human

Services. We focus on healthcare research as

well as quality programs, safety initiatives

for healthcare systems. I am a program

officer in the evidence-based practice center

program. Basically, we have a research agenda

that works on systematic reviews and evidence

reports that we then partner with federal

partners and outside organizations to help

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inform guidelines and other research program

initiatives.

I am a pharmacist and a U.S. Public

Health Service officer. That is why I am

wearing a uniform. I am very happy to be

here. Thank you.

DR. GORDON: Welcome, also. Now, I will

turn it over to Susan Daniels for the roll

call.

DR. SUSAN DANIELS: All right. So, we are

going to have the roll call. Joshua Gordon.

DR. GORDON: Here.

DR. DANIELS: Judith Cooper.

DR. JUDITH COOPER: Present.

DR. DANIELS: Diana Bianchi.

DR. DIANA BIANCHI: Here.

DR. DANIELS: Linda Birnbaum.

DR. LINDA BIRNBAUM: Here.

DR. DANIELS: Josie Briggs.

(No response)

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DR. DANIELS: Ruth Etzel.

DR. RUTH ETZEL: I’m here.

DR. DANIELS: Tiffany Farchione.

(No response)

DR. DANIELS: Melissa Harris.

(No response)

DR. DANIELS: Jennifer Johnson.

(No response)

DR. DANIELS: Laura Kavanagh.

MS. LAURA KAVANAGH: Here.

DR. DANIELS: Meghan Mott for Walter

Koroshetz.

DR. MEGHAN MOTT: Here.

DR. DANIELS: Laura Pincock.

DR. PINCOCK: Here.

DR. DANIELS: Marcie Ronyak.

DR. RONYAK: Present.

DR. DANIELS: Stuart Shapira.

DR. STUART SHAPIRA: Here.

DR. DANIELS: Melissa Spencer.

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MS. MELISSA SPENCER: Here.

DR. DANIELS: Larry Wexler.

DR. LARRY WEXLER: Here.

DR. DANIELS: Nicole Williams.

DR. NICOLE WILLIAMS: Here, on the phone.

DR. DANIELS: Thanks, Nicole. David

Amaral.

DR. DAVID AMARAL: Here.

DR. DANIELS: Jim Ball.

DR. JIM BALL: Here.

DR. DANIELS: Samantha Crane.

(No response)

DR. DANIELS: Geri Dawson is not going

to be here today. Amy Goodman is not going to

be here today. David Mandell.

DR. DAVID MANDELL: Here.

DR. DANIELS: Brian Parnell. Kevin

Pelphrey I know is on his way. Edlyn Pena.

DR. EDLYN PENA: Here.

DR. DANIELS: Louis Reichardt.

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(No response)

DR. DANIELS: Rob Ring.

DR. ROBERT RING: On the phone.

DR. DANIELS: Hi, Rob.

DR. RING: Morning.

DR. DANIELS: John Robison.

MR. JOHN ROBISON: Yes. Here.

DR. DANIELS: Allison Singer is not going

to be with us. This is her first missed

meeting in all of her time on the IACC over

many years. Julie Taylor.

DR. JULIE TAYLOR: Here.

DR. DANIELS: Great. So, we are done with

the roll call unless I missed anyone. All

right.

DR. GORDON: Should we do the minutes?

DR. DANIELS: Yes. So, you have in your

packets the minutes from the last meeting

that took place in April. Did anyone have

comments on the minutes? Any corrections? All

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right. Can we have a motion on the floor to

accept the minutes if there are no comments?

DR. BALL: So moved.

DR. WEXLER: Second.

DR. DANIELS: All in favor of accepting

the minutes as written? Any opposed? Any

abstaining? So, the motion carries to accept

the minutes. We will get them posted on the

web as soon as possible after the meeting.

Thanks.

DR. GORDON: Thank you all. Just a quick

reminder to please when you speak, speak into

the microphones because this meeting is

webcast to the public. That makes sure that

your remarks and questions will be heard by

all.

We have a busy schedule for the day, as

usual. We are going to hear from the National

Autism Association, from the Interactive

Autism Network on mortality and risk in

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wandering. We are going to complete some

committee business, in terms of getting the

strategic plan hopefully finalized and

approved. We will see. Then we will have a

public comment session. Then we will hear

from the Madison House Autism Foundation.

Then we will have our discussion of the

summary of advances and a round robin around

the table.

A quick note – I apologize in advance I

have to run off for a meeting at three

o’clock, myself, with some higher ups in HHS.

So, I am going to be leaving at 2:45 or so

and coming back whenever that meeting is over

for the final round robin. Susan will lead

the meeting in my stead. I wanted to announce

that in advance in case I have to run out

during the talk that precedes the 4 o’clock

hour.

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We were to have an update from the

Deputy Assistant Secretary for Health, Thomas

Novotny, but Dr. Novotny must be running late

so we will move right along. We will go ahead

and get started if we are ready with the

first presentation. We will slot in Dr.

Novotny later.

It is my pleasure to introduce Ms. Lori

McIlwain, the co-Founder and Board Chair for

the National Autism Association, who is going

to be speaking to the committee about her

organization’s work on the issue of wandering

and elopement, followed by Dr. Lipkin, the

Director of the Interactive Autism Network,

who will also be speaking about recent

research addressing the issue of wandering.

This is an important issue with considerable

morbidity and mortality. It is important that

we consider this as a committee. Ms.

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McIlwain, if you will go ahead and take the

podium and go right into it.

MS. MCILWAIN: Thank you. Thanks to the

committee for inviting me here today. I

believe this is NAA's fourth update on

missing children and adults on the autism

spectrum as it relates to wandering and

elopement.

For those not familiar with us, the

National Autism Association is a parent-run

organization. And the issues we focus on are

often the same challenges our own children

have faced or are facing.

In accordance with our mission, we work

to address the most urgent needs of our

community, which often center on tougher

topics that impact the lifespan of our loved

ones, looking at the lethal and higher risk

outcomes first and then working backwards to

determining contributing factors leading up

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those outcomes for the sake of prevention.

These factors can range from mistreatment to

comorbidities, communication challenges,

anxiety, stress response, sensory challenges,

insomnia, GI issues, pain, epilepsy, et

cetera.

We have various programs dedicated to

education and training and direct assistance

and since 2011 have shipped close to 40,000

big red safety boxes to autism families

across the US in an effort to prevent

wandering.

We also work with the National Center

for Missing and Exploited Children and notify

them of minor children with autism missing.

We have helped them intake almost 400 cases.

NAA began collecting data on wandering-

related lethal outcomes in 2009 and then all

ASD missing person cases in 2011. What I will

share with you today is the results from our

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data collection from 2011 to 2016 as well as

an update on the 2017 cases.

We collected data on 800 ASD missing

person cases and found missing cases that

occurred in the US over a six-year timeframe.

Found missing cases are those involving

children and adults who were not reported

missing, but were rather found lost or

wandering as with happened with my son almost

a decade ago when he left the school yard and

was found by a motorist.

Cases were collected through reliable

media and agency channels in real time. And

existing case information was utilized to

collect outcome retrospectively. This is

certainly an underrepresentation of what is

really happening out there, but these are the

cases that were serious enough to be reported

to the media.

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Missing cases were identified and

reviewed to identify diagnosis, US location,

age, gender, race, time of year, time of day,

search response and interaction and outcome

and other relevant information.

Of 808 cases included in the sample, 139

resulted in death, 105 required medical

attention, 309 were close calls, which

includes those rescued from water traffic,

roof tops, other high-risk locations and

situations. The NamUs database was used to

determine that five individuals with ASD were

still missing, one of whom has since been

found deceased. Two hundred fifty cases

demonstrated minimal risk or the information

was unclear.

Of 139 deaths, 71 percent, mostly

children, died from accidental drowning. This

replaces our older statistic that we based on

a three-year sample of 91 percent. Eighteen

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percent died as the result of being struck by

a vehicle. Six individuals, mostly children,

died after being struck by a train. Two

children died from heat stroke and two adults

died from hypothermia. Two individuals died

after falling from a dangerous height. That

was one teen and one child. Two adults died

after mistaken home invasions, one from a

gunshot wound, and one from asphyxiation. One

adult with autism died as the result of

people restraint and one adult death was

ruled a suicide.

Looking at higher-risk categories that

resulted in death or injury, the highest

threat was water followed by traffic. The

close calls in blue correlate with IAN's

survey results and the pediatrics data where

parents reported a higher amount of close

calls with traffic over water. But on the

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lethal side, water is certainly the higher

threat.

Other risk categories known include

eight cases of post-elopement abduction or

predator involvement. Six missing person

cases noted suicide ideations or completed

suicide, which is something we were not

seeing early on. The use of Tasers, physical

restraint or other police involvement were

noted in several cases, including the use of

a Taser on an 11-year-old girl with severe

autism. Physical restraint, as I just

mentioned, on an adult with autism that

resulted in death. And the use of gun fire

reportedly intended for an adult male with

autism who left his group home, which instead

struck his aide.

DR. GORDON: Sorry Lori. The numbers on

the bottom. They are numbers of cases?

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MS. MCILWAIN: Yes, but those are just

the identified. This is actually a paired

down version of the higher risk category.

Children 5 to 9 had the highest number

of deaths while children under 5 face the

highest lethal risk with cases ending in

death nearly 60 percent of the time. The

lethal risk dropped beyond age 14, slightly

increased in adults 25 to 29. Also, I do not

have a slide for this, but the lethal risk

among females with ASD was higher, which is

similar to our previous reports and other

reports out there.

The average age per year stayed

relatively consistent among non-lethal cases,

but we did see an increase in average age.

For lethal outcomes and most used of this

sample period, I believe a previous update to

the committee and NAA President Wendy

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Fournier had mentioned that we were seeing an

increase in age.

Drowning deaths tend to occur in younger

children, especially females. The traffic

injury deaths were more likely to occur in

older children, teens and adults, mainly

males.

This is the first time we looked at

ethnicity for lethal outcomes. We are seeing

a disproportionate risk among black

individuals with ASD when compared to general

population numbers.

When looking at cases by 2012, it was an

unusual year. We initially attributed that to

the warmer temperatures that year. Things

kind of leveled out after that, but the last

twos, the case went back up. And about half

of the lethal outcomes in this sample

happened in the last two years alone and 2017

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so far has been similar to the past two

years.

Risk of death was highest during summer

and spring months. Overall activity was

higher in September, but the lethal risk was

lower. That is likely due to school

transitioning.

We looked at time of day and other

factors that may have contributed to

elopement and of those identified, nearly 40

percent occurred during a transition. School

bus and classroom transitions came up a lot

in that data. Other times were during

commotion or stress, which includes cases

where the individual was frustrated or

agitated. We saw multiple cases where an

upset individual walked, jumped, or ran

straight into traffic. About a third of cases

occurred between 9 p.m. and 9 a.m. where

caregivers were more likely to be sleeping.

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There were a couple of arrests of parents

whose children went missing overnight.

Thirteen percent occurred while playing

outside. This includes school recess. The

lethal risk for those who eloped from an

unfamiliar setting or from a family gathering

was notably high. Reported cases that

occurred from a family gathering ended in

death nearly 70 percent of the time.

For identified search times, most lethal

outcomes occurred within an hour, indicating

that quick research time is pretty essential.

These are the top places from where

individual left and where they were found.

Relative's homes, hotels and vacation homes

posed the highest lethal risk. Again, those

unfamiliar settings. Water and train tracks

also posed the highest lethal risk. Most

individuals seemed to be seeking out quiet,

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low sensory locations more so than special

topics.

What increased risks? Setting types

seemed to have more of an impact on risk than

supervision type. Residential settings near

water increased risk as did outdoor

recreational settings. Times of transition

increased risk. Individuals who became

quickly agitated or upset seemed to be at

higher risk. Caregiver or staff distraction

was a factor. This was when mom or dad used

the restroom. In one case, there was a father

who was winterizing his home while his child

played outside, mother planting flowers,

staff attending to other children or using

the restroom.

Holiday and family gatherings and longer

search times also increase risk as well as

police not knowing where to look or how to

interact.

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What decreased risk? The lethal risk was

lower and more populated areas like schools

and hospitals. That is not to say that this

is not happening from schools. We just

recently had a death in Arkansas. A little

boy, 6 years old, left an elementary school.

The school was not fenced because by state

law they do not require fencing unless there

is a preschool program. That child with

autism was found in a nearby pool.

Populated areas not in proximity to

water seemed to decrease risk. Quicker

response time was also key as well as tools

like silver alerts, tracking and Reverse 911,

which prompted more public involvement, which

we saw a lot of. We are hoping all states

with silver alerts expand their criteria if

they have not done so already to include

individuals with autism and other

disabilities regardless of their age.

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IDs also help decreased risk, especially

once the individual was found. Police

familiarity and training were also key

factors in positive outcomes.

Currently, we are seeing about 20 ASD

missing person cases per month, seriously

enough to be reported to the media. About

three to four deaths per month.

Here are some of the headlines from this

month. This is out of Naples, Florida on July

3, July 5 out of Pawtucket, Rhode Island,

July 6 out of California. This individual

left his group home. He left through a

window. He was severely impacted. He was told

by police to stay put. He could not comply

with those instructions and he was killed by

multiple vehicles. This same individual in

January went to the same highway and was

found safe.

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July 7 out of Indiana. This is a little

boy who was visiting from Louisville. This is

one of those cases when we report this to the

National Center for Missing and Exploit

Children, we flag cases like his because we

see that he is an unfamiliar setting and we

know that these children are at high risk. On

July 8, unfortunately, his body was found in

a nearby pond.

This is July 9 out of Florida. July 10,

another case out of Pawtucket, Rhode Island,

found safe. This is July 11 out of Albany,

Georgia. This was a multi-agency search

overnight. Another July 11 case in a

different Albany, Albany, Oregon. And this

boy's body was found in a pond on July 12.

There is good news. There is more

awareness, more rescues we are seeing, more

understanding to search water first. But we

are also seeing an increase in cases and

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deaths. Awareness, police training and

resources are not widespread. I recently did

training in Arkansas. I spoke to about 150

police officers. I was asking them about

certain tools and technology to see if they

have heard of it. One person raised their

hand. We are not reaching a lot of our

Southern states, Southwestern states,

specific Northwest states with this

information.

There is also a disproportionate risk

among African American individuals with

autism.

Here is an example of an agency that

likely has not had training. A young boy with

autism was reported missing this year. They

searched the home multiple times because as

this lieutenant says, in some cases, missing

children are often found hiding in their own

homes. That might be the case with

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neurotypical kids, but children with autism

are more likely to go to water. That is

exactly where this child was found.

The Alzheimer's community faces similar

challenges. Many missing person cases, more

than our community, not as many deaths as far

as my data goes, which could be the result of

national models like this one from the

International Association of Chiefs of

Police, which has about 30,000 members. They

provide training, train the trainer sessions,

lots of good stuff, including mail pieces

like this one to help first responders

recognize the signs of Alzheimer's and do's

and don'ts of interaction and that sort of

thing.

The program was initially federally

funded in part through the Missing

Alzheimer's Disease Patient Initiative

program along with a radiofrequency tracking

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initiative. Radiofrequency tracking is very

different from GPS. It is low tech. It does

not store data. It does not listen in. It

works under water. It does not require a

Smartphone, which many families cannot

afford. It also runs through local law

enforcement. They must have training, which

is how they learn about autism. Great

program. It has been around for a long time.

Here is one case this year involving a

person with autism who was found via the same

radio frequency tracking technology. Another

case out of California. Because radio

frequency tracking requires a monthly battery

change, this tends to help build familiarity

and trust between the individual and members

of the agency. That is what helped in this

case. The water was not deep, but it was

February. It was frigid. They were worried

about hypothermia. Instead of having to go in

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and forcefully get him out, they were able to

talk him into coming out because that

volunteer knew the teen.

Last year Kevin and Avonte's Law was

introduced and would have reauthorized that

same program and expanded it to include

people with developmental disabilities who

may wander or elope from safe settings. We

believe that this is a critical piece of

this, certainly not the whole piece, but

would be extremely beneficial for our

community and preventing elopement, reducing

risk of injury and death as well as risks

that may arise during interaction. The

training piece alone is critical.

A lot of focus has gone on the tracking

component of this bill. But we are keeping

our eye on something like the IACP model,

tailored for our community. It would be ideal

to provide a good foundation for building

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relationships between law enforcement and

individuals with autism.

Another key concern is really for the

search volunteers and the good Samaritans who

intervene and first responders. What are not

included in this data are those who died or

were injured during a search and rescue. One

individual, just a Good Samaritan,

accidentally drowned trying to save a child

with autism. Another died after discovering a

deceased child with autism in his pool.

The effect of these cases goes well

beyond our community. This is something we

need to recognize as well. We hope that the

reintroduction of Kevin and Avonte's Law will

happen soon. I think it is supposed to happen

any day now. I know the language is being

worked on. We thank Senators Grassley and

Klobuchar for their support, of course,

Senator Chuck Schumer, who originally

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introduced the bill early on, and Congressman

Chris Smith who has fought for this bill and

Congresswoman Maxine Waters as well for their

continued support on this.

Here is what would help. We keep coming

back to this. The need for more involvement

from our pediatric community. They are in a

position to warn caregivers. We are doing the

best that we can to try to reach caregivers.

We could use some help on the ground. These

children are diagnosed. Obviously, somebody

is seeing them and can make recommendations.

We know holidays and family gatherings pose

significant risks. We know these children

will go straight to water. There is no reason

why every caregiver shouldn't be warned of

the specific risks like this about prevention

strategies and to be encouraged to enroll

their children in swimming lessons.

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Widespread training, also essential

federal initiatives would help families and

first responders in our other states. Lots of

training and tools, especially in the Eastern

states, not so much in other states. And

having access to life-saving information and

resources should not depend on where an

individual with autism lives.

Also I am wondering if our Department of

Justice can become more involved with this

committee.

The disproportionate risk among African

American children with ASD needs our

immediate involvement. Outreach, awareness,

and resources are needed. I would be

interested in hearing your thoughts on that

and things that we can do to help address

that.

As I mentioned earlier, we are seeing

some crossover between elopement and

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suicidality and ideation sometimes in very

young children with autism. This is not

something we were seeing early on. As I

mentioned, one adult died by suicide. That

happened late last year. It is the first time

we had seen a missing person case like that

since we began collecting data on these

cases. I can tell you that in 2017, there has

already been two. NAA spoke about suicidality

recently in the UK. Dr. Lipkin was there as

well.

Elopement behaviors and heightened

stress response may evolve into other forms

of exit seeking in some individuals. Study

and discussion is needed on the topic of

self-harm and suicidality and ASD here in the

US. It would be great to see Dr. Lipkin, Dr.

Cassidy from Coventry, and Dr. Rogers from

New Castle at IACC to report on this critical

topic.

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Last November, Christian, a young man

with Asperger's was reported missing from his

grandmother's home. His death was ruled a

suicide. This person's family has been

devastated. I can tell you that his very

brilliant and loving young sister, Hannah,

will go on to be a wonderful advocate for our

community.

I would like to end this presentation

with words from Christian's mother. When you

think of Christian, you find yourself guilty

of being selfish. In our family, Christian

was the guy you wanted to have around to help

make yourself feel better. He was silly,

spontaneous, thoughtful, loving and his smile

swept through the room like wildfire.

Having been diagnosed in his teen years

with early onset schizophrenia and Asperger's

syndrome, those amazing qualities were only

visible to those closest to him as Christian

41

struggled connecting with a world that was

eager not to take the time to understand him.

Christian clung to the safety and

familiarity of his family, but yearned to

receive more from this world in which he

could never completely find his footing. The

difficulties he found in navigating everyday

social aspects of human interaction often

left him exhausted, frustrated, and on the

worst of days, in tears. He sought love and

purpose of being, but in the end, this world

proved too gruesome to withstand. Christian

took his last breath in the coldness of dark

and alone, which is perfectly attuned with

how he viewed his place in the world.

Thank you to Christian's family for

those words and thank you once again to the

committee for your time and your

consideration. If you are a parent looking

for wandering prevention materials, we have

42

those at AWAARE.org, which is aware with two

A's in the middle, and

NationalAutismAssociation.org. We would also

encourage caregivers to download our first

responder toolkits or our Meet the Police

toolkits. We are really encouraging them to

introduce themselves to their local members

of law enforcement. Thank you so much.

(Applause)

DR. GORDON: Thank you for that

compelling and eloquent presentation. Again,

we will have questions and opportunities for

discussions after the next presentation by

Dr. Lipkin of the Interactive Autism Network.

DR. LIPKIN: Thank you all for asking me

to speak today and particularly Drs. Gordon,

Daniels, and Novotny. I would like to thank

Lori for her really very important

presentation.

43

We, at the Interactive Autism Network,

have done some more recent work on this. It

is that data that I would like to present to

you today. This is, as far as I am concerned,

a major issue where we have seen action, but

we have seen a little change and the

questions come up about what we need to do to

try to decrease the issues of morbidity and

mortality for children and adults with

autism.

For those of you who did not participate

in the IACC process in previous years, this

whole story began in 2010 thanks to the work

of Lori, the National Autism Association,

people in Autism Speaks, and other important

advocacy organizations when parents were

speaking up and describing their problems

that they were seeing and the major problems

with morbidity and mortality of children and

young adults at that time.

44

I think there was in some ways really

quite impressive action taken in a very short

period of time. From October 2010, the issue

was brought up at one of these meetings.

Within a month, a Safety Subcommittee was

convened by the Interagency Coordinating

Council. Funding was obtained from Autism

Speaks, National Autism Association. I

apologize for not knowing offhand several

other autism associations to try to do what

would be the first deep dive into looking at

what the prevalence of the kind of problems

that we are seeing.

We, at the Interactive Autism Network,

launched a survey soon thereafter in March

and a report was in hand to the council by

April. It took essentially six months from a

concern to where we had really important

information, which was then published in the

literature one year later.

45

I will just briefly review what that

initial study was all about. At that time, we

surveyed parents who were registered within

the Interactive Autism Network. About a

thousand surveys were completed from families

all throughout the United States, reporting

on wandering and elopement behaviors in their

children. This was the first set of data that

clearly showed the very high rates of

wandering among children and teens with

autism with an overall wandering rate of 49

percent. Essentially, half of children with

autism had wandering at some point in their

lives. You can see that it peaks in early

childhood, but did not disappear and rose as

children became older into adolescents. The

blue line above is the children with autism.

The red line below is their siblings. While

wandering is a problem amongst all children

particularly preschoolers, we could see that

46

in children and teens with autism that the

rates are much higher and really quite high.

At that time, the data showed that

parent report that of all those who

attempted, 53 percent succeeded and were

missing long enough to cause concern about

their safety. Police were called 31 percent

of the time. Two-thirds report a close call

with the traffic injury and 24 percent report

a close call with drowning. Lori reported to

us today on those and who unfortunately the

fatalities we were seeing.

At that time, we saw the higher

functioning children with what was then

called Asperger's disorder were attending to

escape because of anxiety. And those with

lower functioning problems were more likely

to simply run for purposes of exploration or

heading to a favorite place.

47

What was apparent at that time was this

is a very common condition and was a major

concern to families and that more supports

were needed. The ICD 9 coding was then

extended from Alzheimer's into autism. There

was some action there on the part of the

coding system. But clearly, other areas of

research were being called for.

There have really been only three papers

since that 2012 publication that have looked

at this. Again, these are using different

sources of data. Two of them are from the

pathway survey from the Centers for Disease

Control, National Center for Health

Statistics. They essentially verified the

same types of findings. Our data is always a

bit skewed by people who volunteer to

participate and is skewed towards higher

socioeconomic group. But the CDC data really

showed that a third of kids were wandering

48

and of course of the prior year from home,

from someone else's home, from daycare, from

public places. They verified that this

remains a huge issue across survey

modalities. That paper was by Cathy Rice and

group.

And this paper was by Kiely et al. It

took a look at what kind of measure were

reported through that survey. And parents

clearly veered towards using physical

barriers, electronic measures in small

frequencies of about 3 percent. Any type of

prevention strategy was being used by about a

third of parents who report the child who

have ASD only. But for those who have autism

spectrum disorder and intellectual

disabilities, about more than half of them

were needing to use prevention strategies for

children who they knew were wandering.

49

Allan Andersen is a child psychiatrist

who worked with us over the course of a year

from Johns Hopkins and Kennedy Krieger

Institute and was really interested in

extending this data further to see what more

we could learn about wandering. Through

Allan's work with our group, we put together

a survey, looking at elopement patterns and

caregiver strategies. That is what I will be

reporting on now.

The aim of this project was to report on

the strategies that were being employed by

caregivers for individuals with ASD in order

to prevent elopement behavior, their

perceived effectiveness, burden of use, and

cost. What I will be reporting today are the

perceptions of the caregivers and the

activities that they are employing at this

point to prevent elopement.

50

This survey was launched a year ago

between March and September of 2016. Only

parents of children below the age of 18 were

surveyed so we do not have data on those 18

and above. This was typical of our ASD cohort

who all have their autism spectrum disorder

verified through multiple modalities.

The elopement behavior questionnaire was

centered around the basic question. Does your

child try to leave safe spaces and/or the

supervision of caregivers? With that as the

fundamental question, we looked at what the

children's diagnoses were, what their

patterns of elopement were, what the

consequences were, how the parents responded,

what preventive interventions were being used

including medications, how they perceived the

effectiveness, the burden of use of these

strategies and what their estimated costs

were.

51

We had 867 people who completed these

studies. I should say that this data has

previously been presented at the American

Academy of Child and Adolescent Psychiatry

and at the International Meeting for Autism

Research. This is the third time that this

data is being presented. In a recent re-

analysis – I am presenting a recent re-

analysis, a deeper analysis of this data that

we have done more recently for this

presentation.

There were 867 families who completed

the survey. Of those 867, 526 said that they

had ongoing preventive interventions or their

child was having elopement behavior. And it

is those 526 that I will be reporting on to

you right now. Their children average about

11 years of age. It was clearly predominantly

male that they were reporting on. It was

predominantly a white population and non-

52

Hispanic population. This was consistent with

those who were represented within the

Interactive Autism Network.

The autism severity was on the higher

side with a mean social responsive scale T-

score of 90. Parents reported that 16 percent

of their children had intellectual

disability, 31 percent had some sort of

language disorder. High rates of ADHD and

anxiety disorders were also reported as well.

Twenty percent of the children had problems

with aggression and 24 percent or one of

every four had problems with self-injury.

Of these 526 parents, this gave us some

sense of the frequency. We asked them how

often these problems were occurring. And 22

percent of them said that in the past two

years their child had no attempts, but 49

percent or nearly half said that their

children have had an attempt within the past

53

one to two years. In fact, a third of them or

29 percent report that their children were

having at least one attempt per week. Very

high rates there.

The children were eloping as other

stories like Lori have told already of

predominantly from home, but they had

problems in public places such as stores.

Even in the classrooms, 41 percent elopement

rate. And also transitions from one place to

another children were running away.

They felt that these were occurring of a

bunch of different situations. Forty-three

percent were escaping an anxious situation,

40 percent of stressful environment, 24

percent escaped when there was a conflict

that they wanted to escape from. Thirty-eight

percent reported sensory problems,

particularly noise standing in their way or

some other uncomfortable sensory experience.

54

Sometimes it was purely out of interest

about what was going on. Twenty-seven percent

were pursue because they had some special

interest in doing something such as reaching

or playing for a toy, reaching a favorite

food. And then there were some children who

were felt to do it on the basis of

impulsivity where they were under-stimulated

or centered in a boring environment.

Ninety-six percent of them were using at

least one intervention to try to prevent

their children from wandering further.

Overwhelmingly people were doing what I have

categorized as using environmental

strategies. Half of them had dead bolts

installed in their house so the child cannot

leave. Half had special latches put on their

doorways. And more than a third were putting

up special gates to try to prevent the child

from escaping.

55

Many were also employing other types of

services such as behavioral psychology,

assistance, use of social story modalities or

having a one-on-one aide to try to prevent

their child from eloping or wandering away.

A smaller number, but significant number

is using different types of tracking devices.

Nineteen percent reported that they did have

some sort of GPS tracker. And those who did

not use electronic devices – many were still

using IDs such as bracelet, shot tags, Medic

Alert bracelets. Parents are trying many

different ways to try to keep their children

safe.

How effective are these? We wanted to

get parent's perception about these

strategies and how well they were working.

Overall, they felt that there was good or

very good effectiveness of about 75 percent.

In those families though who had high rates

56

of elopement, they only reported

effectiveness of about 61 percent. Despite

their best efforts, they were still having

major challenges.

The mean number of interventions that

they tried was six, but standard deviation

quite wide. Parents were trying many things

to try to keep their children safe. And of

course, the higher rates of elopement of

their children, the more they would try. But

even those who did not have high rates were

still using at least five different

interventions because of their concerns and

their worries about their child eloping.

We were concerned about the financial

burden for these families. You could see that

families of children who have rates of

elopement of at least once a week were

spending more than $5000 out of their pocket

to try to keep their children safe. And

57

obviously there is a very high sense of

burden that all of these families are feeling

and worry around this. This is a crisis for

families. It takes a tremendous amount of

their time and energy and concern as Lori so

well highlighted today.

The question is what did they feel was

the most useful to them and what were the

burdens attached to them. We have categorized

them into four different categories. Those

that were felt to be good as well as cost

effective were putting up window bars,

fending, and project lifesaver bracelets.

They found that to be good and cost

effective.

There were some limited access

modalities that people liked, but

unfortunately access was limited. Home

behavioral specialists were felt to be

effective, but that tends to be limited

58

because it tends to be costly and families

need to be able to access that through

insurance that they may have, health

insurances or other insurances.

School aides also were felt to be really

quite effective with minimal burdens. And of

course, there is no direct cost to families

around that, but it is limited because the

school has to agree to provide that for the

families.

Service animals were interestingly found

to be quite effective, but the burden was

felt to be fairly high in bringing a pet and

dealing with a pet in the home.

Ones that people are quick to think of

because they are cool and they are high tech

are security cameras and GPS trackers. The

effectiveness was not clearly as – they were

not felt to be clearly as effective as these

59

lower tech devices. And of course, they have

significant costs attached to them.

From the medical sphere, the question is

is medication important and does that play a

role. Again, this is parent perception. Half

of the parents were describing their children

as taking some sort of psychiatric

medication. And 16 percent said that they

were specifically taking it because of their

child tendency towards wandering and

elopement.

You can see the categories are across

the board of the types of medications that

children are being treated with the highest

rates of being what we see highest in

children with autism. That is antipsychotic

medications, ADHD medications, and

antidepressants. Those were felt to be most

effective where you see labeled here.

Lorazepam and Diazepam actually were reported

60

as the most effective. The stimulant

medications were less effective for the

elopement behavior.

In conclusion, we felt that simple

environmental and behavioral interventions

are generally rated by caregivers as cost

effective and much more effective than

medications in reducing elopement.

Medications are generally perceived as

ineffective with high rates of side effects.

Questions that remain at this point are

that for interventions that are rated as

highly effective but are less commonly used,

what are the obstacles to implementation?

Maybe we need to look at these. There things

like cost. Fencing is a tremendous cost

burden for many families or for school

systems for that matter. Availability is a

problem in terms of having personal aides in

school or at home and similarly with

61

behavioral specialists. And then things like

door alarms and others that represent a major

burden and hassle for families.

We also do not know if there are

subtypes of elopement that will require

different prevention strategies. We hope to

get to that with our data. We do not yet have

that.

At Susan's invitation, Dr. Daniels'

invitation, I am going to bring up one other

important issue to us because for me, I am a

developmental pediatrician. For me, wandering

and elopement is really a health crisis. We

are talking about children who are getting

ill, children who are dying and really quite

limited attention from the health care

establishment around this. But similarly, I

think we are seeing the same in terms of

suicidality in autism. There is a big untold

62

story here that I think also needs to be

considered as we go forward.

I will tell that there is very little

research on suicidality and autism. There are

really just two key papers, one out of the UK

by Dr. Cassidy and group where they looked at

adults with Asperger's syndrome. And two-

thirds of those adults were contemplating

suicide compared to 17 percent of the general

population. A third had actually planned or

attempted suicide. These were adults with

Asperger's disorder.

In contrast to other things that we see

in the autism population, the risk was

greatest in women with Asperger's disorder,

which is actually just the opposite of

suicide behaviors in the general population.

In Sweden, they took a look at their

massive data samples between 1987 and 2009.

In adults, they also found that suicide was

63

the leading cause of premature death in

populations of children with autism spectrum

disorder. If this is not a health issue then

what is?

There is really no current published

data from the United States on this. My

colleague, Roma Vasa, and some others at

Kennedy Krieger and Johns Hopkins recently

looked at data from the pediatric emergency

department at Johns Hopkins where there was

active suicide screening going on in all

pediatric patients coming to the emergency

room. They just looked at children who had a

diagnosis of autism spectrum disorder.

Of the 104 children who had autism

spectrum disorder being screened in the

emergency department, 31 of them screened

positive as being at suicide risk. One out of

every three children coming into the

emergency room with autism was at some sort

64

of suicide risk. Two-thirds of them without

the screening process would not have been

identified as having any sorts of suicidal

ideation. Of that group of 104, there were 12

suicide attempts. I am not going to go

through the causes of suicide, but it is a

wide range of things that we see in all

populations. Again, this is a major health

crisis from my particular perspective.

We have just launched in April, National

Autism Awareness Month, what we call Mental

Health and Suicidal Behavior Questionnaire.

Just as the parents were informative to us

around elopement and wandering, we have

launched a survey looking suicidal behaviors

and other mental health issues to establish a

clear understanding. This survey is actively

ongoing at this point in time.

We are, again, just looking at children

because of issues of limitations on

65

investigations with adults. But we are also

having to survey parents who have a dependent

adult as well. We right now have about 55,000

participants in IAN. This was distributed

online to families. The questionnaires are

laid out as you see here. We wanted to find

out generally not just suicide, but what is

the mental health history that their children

or dependent adult are experiencing. What

kind of major family life events are

occurring? What are the life events that are

occurring for the individual with autism?

What are the suicidal behaviors that that

person is exhibiting?

We also want to find more about who

these children and dependent adults are. The

lead question around suicide is has this

person ever expressed any thoughts or

feelings about wanting to die or not wanting

to live anymore. Have they ever expressed any

66

thoughts or feelings about wanting to end his

or her life? Has he or she ever indicated

that he or she had a plan to end his or her

life? Have they ever actually tried to end

their life? This is a very sensitive survey.

There are multiple warnings that we provide

to families as they fill this out, but we

think this is important information that we

do not know in the United States and really

is important to the autism community.

What I cannot share with you by slides,

but I can share with you by word is that we

so far – we will be running this survey

through the end of September. We have had 680

responses to date. We did a preliminary

analysis of this in May for a suicidality and

autism summit that Lori and I attended in

England.

As our reports in May, there was passive

suicidal ideation reported in 42 percent of

67

the children or dependent adults, active

ideation in 23 percent. Almost 10 percent had

some sort of suicidal plan and 4 percent had

suicidal attempts.

Really quite fascinating is we asked

when they first had their suicidal ideation

because we were thinking about this as a

problem in teens and young adults. In fact,

the first signs of passive or active ideation

were occurring as young as 8 and the median

age was 10 years of age that children are

starting to show worry about self-worth and

possible ending their life.

The median age for having a suicidal

plan was 12, again, beginning as early at 8.

And the median age for an actual attempt was

14 and with the earliest attempt being

reported as 9. We will be collecting this

data again through the end of September. We

think this is going to be very important data

68

to inform certainly the committee as well as

the United States policymakers, advocates,

and researchers. But this is getting

attention worldwide at this point and I think

it is a next step that I think we all need to

take.

I think we have done really some great

work here in terms of exposing the problems

around wandering and elopement. The problems

are still out there and I think we need to do

the same around suicide because I think

others – probably nothing more important from

my perception as a physician around issues of

health and life around children and adults

with autism spectrum disorder. Thank you.

(Applause)

DR. GORDON: Thank you for another

compelling presentation both on wandering and

on suicide. We have had presentations here on

the risk of premature death and autism. And

69

adding suicide to the list of possible

concerns is important.

We can now open it up for questions or

comments from the committee. They can be

addressed at either of the presenters.

MR. ROBISON: I think that it is clear

from these presentations that suicide is a

major problem in the community. And when we

look at that in combination with the

elopement and wandering, one thing that I

take away from this is to be blunt. There is

a lot of bullshit in wishful thinking in the

way we are putting this research together.

Because if I read those slides right, we have

the statements of what they described as the

Asperger people who can articulate I guess

why they ran away, saying that they mostly

ran away to escape stressful situations. And

then again if I read this correctly, the

autistic people who presumably cannot

70

articulate for themselves, their parents said

he ran away because he was curious. For

Christ sakes folks, do we truly believe that?

Do we truly believe that the people who are

articulate ran away because it was stressful

and everyone else ran away because they were

smiling and curious? I think when we have

that kind of thinking, it is no wonder we

don't solve this problem.

I look at those slides and what I saw

time again was stressful situations cause

autistic children to flee. I think about

myself as an adult. I think about all of you.

How many times have you, my fellow committee

members, said I have to get out of here? But

we are adults so we are not eloping. We are

going somewhere else.

Every autistic person I know says with

some regularity I need to go into a quiet

space. I need to cool down. I need some time

71

for myself. Again, it is ordinary. But for

these children, somehow it is elopement. It

is a special, unique condition.

I think we have to recognize that this

is an ordinary thing. We create stressful

situations and kids who have no other coping

mechanism respond by running away. We are

putting our heads in the sand until we face

that.

I listened to the extreme seriousness of

the situation. So many autistic people die.

We are not facing what is to me an obvious

truth. Am I nuts here? What do you folks

think?

DR. GORDON: One thing that did astound

me and that is why I asked the question in

the moment about the numbers in the bottom of

the slide was that the pure number of cases.

Obviously, it is probably not comprehensive.

72

It is a best attempt, but it is a lot of

individuals who are dying.

I wonder if we might have a response

from either of the presenters first

specifically about what the research says in

terms of stress as an inducer of elopement

and/or suicide and/or the protective measures

that one might take in that context to try to

reduce it and then we will have some more

comments from the committee.

MR. ROBISON: This is the rule, not the

exception, Josh. I have been suicidal. Almost

every autistic person I know.

DR. LIPKIN: It is quite clear that

anxiety and stress are really key components

here that are driving many people to action.

MR. ROBISON: (inaudible comments)

DR. LIPKIN: Again, this is a parent

report. It was the way the question was

framed. I think one has to be cautious about

73

that. This is all the information we have.

This is all the data. I would like to spur

other researchers to really dig deeper in the

kind of questions that you are asking, John,

because we know it is a problem. We really do

not quite really understand the depths of

what the issues are that are driving it.

MS. MCILWAIN: I can give you some

examples. We had a 13-year-old girl who was

on the Staten Island Freeway. She did not

want to go to her father's house. She leapt

from the SUV into oncoming traffic. She

jumped from the car.

Another case like that was a teenager

who got into an argument with his foster

parent. Walked out of the car and walked

straight into traffic.

I was reading a spectrum.org article

about suicidality a couple of years ago. It

is a story of Bianca, a 15-year-old girl, who

74

did not get the chicken dinner that she

loves. This disappointed her greatly and she

spoke of – please, if you could just kill me

now, we can just both get this over with. She

said that to her mother.

Fast forward two years, a 17-year-old

boy just in February left his home because he

did not get the spaghetti dinner he wanted.

These seem like really small triggers to

us. They are huge triggers to these

individuals. The 17 year old who left his

home – he was struck by a car. He could not

talk like Bianca according to reports.

If you are looking at both cases, they

are leaving because of some type of acute

stress. They are responding in a way in

either they impulsively want to harm

themselves or may not understand and not care

about what threats come along such as

traffic. That is something that we have to

75

look at and decipher especially in the

nonverbal kids who are going straight to

threats.

DR. GORDON: John, if it is okay, I want

to make sure we get other people from the

committee. I have Laura, David, Judy, David,

and Samantha.

DR. PENA: Thank you both for the

presentations. I wanted to quickly say to

Lori. I am a parent of a 9 year old with

autism. We are recipients of the big red

safety box. That has actually prevented my

son from wandering. He just started a couple

of months ago. This presentation is very

timely in my personal life. The door alarm in

particular is jarring, but for good reason.

Thank you for that free resource that you

provided to hundreds of families.

My question to follow up on John's point

to Dr. Lipkin is is there a way to

76

disaggregate your data in terms of whether

the child has complex communication

challenges or limited speech so that we can

attribute causes that the parents report to

those children or individuals who may not be

able to articulate the reasons why and then

we can maybe have some more information to

fill in the gap.

DR. LIPKIN: One of the strengths of the

Interactive Autism Network's data is also one

of its weaknesses or what it has been

criticized for. It is purely parental report

information that we have. We do not have

clinic data except by parents reported.

What we do have is their report where

the child had intellectual disabilities,

where the child had language disorders. We

probably cannot disaggregate that, but it is

parental report. It is not based upon

clinical information.

77

DR. AMARAL: I wanted to agree with John

that I think it is clear that stress and

anxiety is under appreciated particularly in

younger individuals with autism who have

intellectual disabilities or who have lack of

language.

John, I think to speak to your issue, we

have been really focusing on trying to

differentiate anxiety from the symptoms of

autism for the last few years. One of the

things that has impressed me is that once our

clinicians determine that a particularly

young child has severe anxiety, often times

when they go to the parents and say do you

know your child has anxiety. The parents say

I had no idea. A lot of the symptoms that our

clinicians determine are actually an anxiety

disorder and have been assumed by the parents

to be just part of the autism.

78

I think that there has to be an

increased awareness particularly in subsets

of the autistic population about what anxiety

really is and then maybe those charts. Again,

this is parent report. I suspect a lot of our

parents who we finally say your child has

anxiety had no clue. They just maybe

misinterpreting why the children are eloping.

I agree with you. It really is an underlying

anxiety disorder and severe stress that just

was not appreciated.

DR. GORDON: I suspect the answer may be

no given your previous answers, Paul. You

showed data that the efficacious medications

were predominantly benzodiazepines and that

might also speak to this anxiety issue. Do

you know if that was the reason why? The

thing that popped into my head when you were

showing – benzodiazepines – make them go to

sleep, but perhaps there are actually

79

treating an underlying anxiety disorder,

reducing that acute stress response.

DR. LIPKIN: We do not have that

granularity. Basically, we asked what kind of

things were they using for their child's

elopement behavior. We provided a list of

medications. They just checked off which ones

that they had. We do not quite know.

I was surprised that the benzodiazepines

came out so high. They are not that widely

prescribed in general. But I think it is

telling that medications that are more widely

used whether it be the stimulants for ADHD,

whether it be the anxiety medications,

families were not finding those more commonly

used medications as effective.

DR. GORDON: Right, particularly the

antipsychotics, which you might think might

be prescribed for that reason.

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MS. CRANE: I have a few comments. I am

just going to apologize in advance for having

a few things to say. One thing that really

struck out at me in the first presentation

was the elevated risk to the African American

community. We are working on our own safety

surveys as well. And what we are finding is

that because African American individuals are

at higher risk of police violence, there is a

real sense in the community that we need more

alternatives, more ways that we can get help

for a missing child, but do not involve

deploying armed police to the scene.

We have definitely high profile cases

like Arnaldo Rios Soto, who went missing from

his group home. He was not really missing

because his aide was right there, but he was

not where he was supposed to be and a police

officer shot at him and traumatized him. Now,

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he is institutionalized because he could not

go back to his group home after that trauma.

I think that it is really important when

we talk about training police that we also

start looking at interventions that do not

involve police at all. That can be another

reason why tracking devices or other things

that might involve getting police to the

scene might be an issue.

We also need to worry about training

that is not the right training. There was a

case a few years ago in which an experienced

hiker who also was autistic was lost in the

Arizona Desert. He was found near a creek.

And when asked about how did you find this

person. The police officer said I knew that

autistic people were drawn to water so I

looked at the water. A normal person would

say he was lost in a freaking desert. If he

is still alive three days later after he went

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missing, he is probably near some water. I do

not know what other people look for when they

are lost in the deserts. Maybe that is

something we should consider. You should

definitely look near water when someone is

missing, but I would say that that is because

if any child is missing, you should look near

water because if they are near water, they

might be drowned in one or two minutes so you

better look at the water as fast as you can.

Then you start looking at other places. That

is common sense.

They do not know that, but I think we

need to make sure that we are not

perpetuating a myth of autistic people that

are human dowsing rods that just immediately

go to the water. Yes, you should look near

water, but I feel like we need to make sure

that are messaging that right.

83

MS. MCILWAIN: To your point, I think

that we have to not minimize what is

happening out there with the water. This is

really just to help first responders

understand exactly where to go as quickly as

possible and not just them, but also parents.

MS. CRANE: What worries me is –

accidental drowning is a leading cause of

death for all children. This is not an

autism-specific thing. And frankly, your

study, while it is absolutely showing a huge

pattern of drowning deaths in autistic

children, we did not look at non-autistic

children wandering and what their cause of

death is. We just need to be very precise

when we message about this that water is

dangerous to all children. It is not because

we are necessarily drawn to water, but

because water is a very fast killer. I have

children too. We are paranoid about them

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around water because drowning is a fast and

silent killer. We need to make sure that that

message gets out.

With respect to suicide, I really want

to quickly get to suicide. I am worried and I

think I agree with John here that conflating

suicidality and wandering could be a real

problem. We know that people in the autism

spectrum have been dying from suicide for a

very long time. It is not new. If we are

seeing more of it in media accounts of

wandering, it is probably because media is

treating all autistic missing persons cases

as wandering because of the heightened

awareness of wandering.

People who are suicidal are not lost.

The solutions are probably not the same.

Having a door alarm or having a tracking

device is not going to stop someone from

being suicidal. It might stop someone from

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accidentally going to a dangerous place. But

it is not going to prevent suicide. I am not

sure that that is going to help when we think

we need to make sure that we are talking

about these issues separately.

With the investigation of the

suicidality survey, I am really concerned

that the survey is asking parents about

suicidality and not asking the actual

autistic people about suicidality. Sometimes

a parent has to be there to answer because

they kid literally cannot. But if we are not

asking the actual autistic person, it is like

what David mentioned. Sometimes parents do

not know that their kid is anxious. Sometimes

parents do not know they are suicidal. I do

not know if we would have a study on teenage

suicidality that does not ask the teenagers

if they have felt suicidal. This might have

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some IRB hurdles. But if we want good data,

we really need to do that.

DR. GORDON: Thank you. Any more comments

or questions?

DR. MANDELL: I was wondering if either

of you two knew or anyone on the committee

knew about whether safety planning, which is

a rigorously tested intervention for reducing

suicide among suicidal people has been

adapted or applied to people with autism or

people with developmental disabilities. It

seems like a very logical fit. I do not know

if it is something that perhaps the committee

would want to recommend as a fertile area for

exploration.

DR. GORDON: Anybody aware? I am not

aware of it. We do have ongoing studies at

NIMH in using the screener actually that Paul

discussed, the ASQ, and adapting it

specifically for autism individuals. It is

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undergoing testing right now in two different

sites, an inpatient site and an outpatient

sites, but that is just screening. That is

not actually – then what do you do if they –

as you can see, they are going to screen

positive at high rates. And then if you

follow up, actually two-thirds of them will

have significant --

DR. MANDELL: Sometimes when the rates

are really high especially if you could

identify subpopulations where the rates are

really high, maybe you do not need to screen.

Maybe we ought to be talking about safety

planning, which is a relatively light touch

with everyone or with certain groups of

people with autism who are at high risk.

DR. GORDON: I would say the point that

Paul raised was that if you do not screen,

you will not identify the folks at risk

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because two-thirds of them are not going to

otherwise have evidence that ideation.

DR. RONYAK: Thank you. I am also a

parent of a child that is high functioning on

the autism spectrum. He just turned 8 last

weekend. I wanted to say two things. I

apologize for taking some time.

One is I do want to come back to the co-

occurring. My child was also diagnosed with

ADHD. Clearly, he is taking ADHD medication,

which has taken some time to get him

acclimated to. He also takes melatonin in the

evening because the anxiety and the lack of

sleep – we love to have sleep in our house.

Having a child go to sleep before 1 a.m. and

getting up at 3 is extremely helpful.

However, you have to think about on co-

occurring if it is not managed, if the sleep

is not managed. How does that influx into the

anxiety that is going on in school. When he

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was in kindergarten, it was our first episode

of him literally leaving a teacher that he

absolutely adored and the principal found him

out on the street on the curb because he was

upset about something.

You have to tease it out. Is that

anxiety? Is it ADHD? Is it frustration? Is it

a social skill piece? But at that point in

time, he was not diagnosed. We did not know.

I know that we had some concerns and he

does go to Montgomery County, which I have to

say has phenomenal services for students. I

just think that is one thing that maybe we

need to think about as we are looking at

research.

Coming back to Samantha's point and when

she was talking about asking the child or the

young person. For the very first time I think

it was in May, my son finally said what if I

ran away from home and I never came back

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because I could not. We did not know what

that meant so we asked him. It was the first

time he talked about death. It was over

Legos. You sit here and you go something that

simplistic. How does he know about death? How

does he know about running away? At this

point in time, he was 7. We never spoke about

him not being in our home or running home.

You do wonder. Is that pieces he picks up at

school? As we all know, they are around other

children who we do not know what those

conversations are about. But to know that you

can be that young and be 7 years old and have

the concept that you can run away to try to

find safety because you cannot deal with the

emotion of whatever is occurring at home or

your Lego time was being cut off because it

is time to go to bed. Those kinds of things.

It makes me wonder if Samantha brings up

a good point of yes, we might have some IRB

91

challenges. But if we are speaking to the

individual themselves, we may have completely

different answers than what my husband and I

would fill out on a questionnaire. Thank you.

DR. GORDON: Direct follow up?

DR. PENA: I am wanted to follow up on

the fact that black families are

disproportionately affected by wandering. I

am wondering if you know of any research or

even practitioners who are focusing on

investigating more about that because that

seems to be a big issue and yet I recall the

survey had 88 percent white participants in

one of the studies that was reported. How do

we reach the black and African American

community?

MS. MCILWAIN: That is a good point. I am

looking for guidance from you. We know that

the participation among the African American

community is not there. For survey like IAN

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and other research studies and initiatives,

outreach is needed. These are the outcomes

though. Media reports. We were able to go in

and look at that.

It is important that we can focus some

of our efforts on that type of outreach. They

are not hearing from us. We need to figure

out ways to reach them with this information

before Thanksgiving, before Easter, before

every holiday. We put out warnings. We

prepare and don't scare. We put out warnings

to caregivers that this is – your child.

Their wandering tendencies may increase and

here is what you can do. In every holiday,

there is always that one kid, that one family

that we missed or maybe more. We need to find

ways to reach them.

If we do not have programs through law

enforcement and fire fighters. Fire fighters

are great. I saw lots of enthusiasm from them

93

when searching for our kids and helping out.

If we have programs in place then we can

reach more on the ground. Pediatric

developmental physicians can reach more

people on the ground. There is just not

enough happening in the pediatric community

on this issue.

Where are the ideas on what to do for

that and for programs for our African

American communities and other communities

that may be underserved?

DR. GORDON: Larry and then Linda. That

will be it. We have to give Dr. Novotny a

chance to give his report.

DR. WEXLER: Dr. Lipkin, how did you

identify the recipients of your survey?

DR. LIPKIN: These are families who

electively on their own choose to register to

participate in our network and to take calls

94

for research. They are all people who are

consented to be invited to participate.

DR. WEXLER: I just want to reiterate

something I have said here for years. That

would be on the lower bound of your survey in

terms of age, you are undoubtedly getting

parents of kids with much more significant

autism because they are identified that early

typically. Your 3, 4, 5 year olds are within

the school environment, preschool

environment, typically identified as

developmentally delayed, speech language.

That is just how it is. That is how the data

reads.

I think it is important when you

represent – I know you are shaking your head,

but I maintain the data for six million kids

with disabilities in the United States. I can

tell you. We track the identification ages.

We have some idea of why. And parents are

95

specifically given the option to have their

child identified as developmentally delayed

when they are younger because that is how

they want them identified or speech language.

I think it is important when you talk about

those 3, 4, 5, 6 year olds even that you

might want to have a caveat that these are in

fact self-identified and typically and maybe

more severely involved in terms of the

children that is within the typical

population.

DR. LIPKIN: It is important that you

bring it up. We always make a point of saying

that these are self-identified families and

the level of severity is spelled out in the

data.

But what I will say in terms of the skew

in age is we have been around for ten years

at this point in time. Actually the mean age

of the children registered in our survey is

96

about 13 to 15 right now. We are not

representing a younger cohort. We are

actually representing an older cohort that

lines up with the history of our network.

As you know better than I, every large

population based survey has specific

strengths and specific weaknesses. We do not

pretend to be anything in the voice of

parents here. I think that is really quite

critical.

DR. GORDON: Thanks. I am going to ask

that Linda be very brief.

DR. BIRNBAUM: I just wanted to respond

to Edlyn's question and Lori's response

related to the lack of participation or the

lack of numbers of the African American

community. There is also a lack related to

the Hispanic community in the data that we

had in the Native American community.

97

But the only way that you are going to

get those communities involved is by working

with the communities. You absolutely need

some kind of community-based engagement, not

so much outreach, but engagement.

DR. GORDON: Thank you very much to both

the presenters.

(Applause)

DR. GORDON: Now, it is my pleasure to

introduce Dr. Thomas Novotny.

DR. NOVOTNY: Thanks Josh and Susan and

everybody. I am very sorry that I am so late

this morning, but I have been sitting out in

the gate waiting to get cleared. I guess

wearing a suit and having an ID does not

really count. Usually it is a very smooth

process and Susan takes care of all the

details. Somehow, some dots did not get

connected. I am very sorry to be late.

98

But I just wanted to give you a couple

of updates and let you know that on Friday,

we completed the final interagency review of

our autism report to Congress on the

transition of youth to adults with ASD. All I

can tell you is that this has been a very

thorough process of clearance. I think what

we have come up with is a very well-

researched exploration of all of the issues,

all the equities on autism spectrum disorder

in the transition phase in the government and

with the input of also some of the

stakeholders as well as the GAO report, which

I think you are very familiar with right now.

That means that we had to send this

around not just to HHS, but to the Department

of Defense, Department of Labor, Department

of Transportation, Social Security

Administration, and everybody else. That

takes times.

99

It looks like we will be able to get

this – in this last review was minimal

comments and I think we are in pretty good

shape right now. I want to thank Labor and

Education especially for their – and Social

Security Administration for very substantive

comments towards the end.

I think what we will be able to do is

have a bit of public roll out for this I am

assuming in a couple of weeks or so. I cannot

promise you the exact time, but I am pretty

sure that there are no hang ups right now.

The report gets looked at one more time by

the policy team, which is the political team

that is in HHS just to make sure that they

are all happy with it. But they have seen it

a couple of times already anyway. I do not

think it is a problem.

At any rate, we are expecting to do a

bit of a roll out on that. We will have some

100

help from NIMH for printing and production.

We will have we hope a journal article that

comes out in accompanying this with some of

the recommendations that gets made and a few

other things. Not too big a deal, but at

least something that makes it publicly

accessible.

I just want to say that I think it has

been a really useful process even though it

has been almost a year overdue to Congress,

but we can do with resources that we have.

It is certainly educational for all of

the members of the interagency working group

that were on this. I think that is one of the

biggest accomplishments is that we actually

have established much more communication and

some of these things have benefited, I think,

the IACC as well in the process. We have

established a very great communication and

partnership with Susan and her office and

101

many of the other folks that have been

contributors.

That part, I think, actually answers one

of the suggestions or requests from the GAO

report, which is do something about

collaboration and improve that and I think we

have. It is something I think will continue.

And then we benefited from some

recognition from Secretary Price. I put out a

blog post at the beginning of autism

awareness month in April and then he also put

one out at the end of the month, which was

good. It means he was paying attention and

the policy team is paying attention as well.

That is a good sign, I think.

On the second thing that the GAO

recommended is that we interact and connect

up with something called the Federal Partners

in Transition. This was an ongoing quasi-

formal interagency activity involving the

102

Social Security Administration, Labor,

Education, and HHS to a fairly limited

degree. That group deals with transition in

general. That is for all youth transition to

adulthood and the social services and the

medical needs as well for the general

population. But now, I think we have

established a good rapport. We have actually

participated in some of the interagency

activities of that group to make sure that

autism is looked at as another piece of

responsibility and at least awareness.

I think that we have answered what the

GAO has requested of us. I think we will

hopefully continue with the interagency work

that has been started. It has been, again, a

great educational process for all of the

members I think on the committee. I want to

thank them. There are several in the room

here. I just want to make sure that we

103

continue that – that was not the end point.

That was actually the stimulant rather than

end point.

I would be happy to answer any

questions. I do not really want to blow the

cover of all of the things that are in there

yet until it is actually cleared out of the

policy office.

In the October meeting, I believe, I

will have a little bit more time to go

through what the details were and we can

discuss it in more detail then.

DR. GORDON: Are we going to be able to

have the full report when it is posted to the

IACC site?

DR. DANIELS: Yes, it will be posted on

the IACC site so once the final production is

done. And we will share the copies here at

the meeting on October 24.

104

DR. GORDON: Are there any questions for

Dr. Novotny who is the national autism

coordinator and the deputy assistant

secretary for health?

Thank you very much. Dr. Novotny. The

reason why we interrupted the discussion,

which we can now resume, is that Dr. Novotny

has to leave a little bit before the break.

If there are any other questions or

comments about the discussion on elopement or

suicide, we can resume that. I apologize

because we were in the midst of it, but I had

to interrupt.

MR. ROBISON: I just would like to remind

the committee that this childhood is only a

quarter of the lifespan and one of the things

I think we and IACC need to keep in mind is

we need to keep pressing researchers to take

the more difficult path and track down

autistic adults. I understand autistic adults

105

are much harder to find than children who are

in ready supply in clinics. I understand we

do not have parents to bring us in, but that

is most of the population. I think it is

scary as what we have just heard. The true

numbers of suicide are likely three, four

times higher because that is the whole

population. I just would like everyone to

keep that in mind.

DR. GORDON: I believe, Paul, that you

did have some adults in the suicide study as

I recall. Can you remind us?

DR. LIPKIN: This is only what I

described as dependent adults. The report is

still a parent or a caregiver. We do not have

a primary report from adults.

I will say that the English have been

doing some research around that, but there is

nothing like this in the United States yet.

106

DR. REICHARDT: I just wanted to say,

John, and I think you know this that the

SPARK study has recruited several thousand

both dependent and independent adults.

DR. LIPKIN: I will just build on that.

IAN is active partners with SPARK in this.

Together we probably represent – IAN right

now has about 2500 adults who have

registered. Interestingly over the past year,

we have had a lot of adults who have

electively chosen to register on their own

and SPARK is finding the same.

DR. TAYLOR: I think it will also be

important in the US studies and I know that

this is happening internationally to make

sure that we are thinking about embedding

suicidality and mental health questions and

studies that are not necessarily about

suicidality and mental health because I think

we always have to worry that if we are

107

getting samples that are responding to

surveys about that that we may be inflating

the numbers, not to suggest that this is not

a big problem, but I think we have to be

careful about that. If parents get an

invitation to respond to a survey about your

child's suicidality, are all families going

to respond to that or the families who may

have some concerns about this? I think we do

not know.

To embed these questions into larger

surveys and I know that we have to think

carefully about this from IRB perspectives

that are not necessarily about these issues

and families are not necessarily responding

our adults for these issues specifically. It

may give us another look. It may be more

accurate or maybe not about what the scope of

this problem in adults and children in the US

in particular.

108

DR. LIPKIN: Can I make a comment on

that? I agree of course. The research

community – this is an area that the research

community is very nervous about entering. It

is easier to avoid it. It has been avoided

for a long time. These are very difficult

things to ask families. They are very

difficult things to research. The solution

has been to be avoided. There probably needs

to be calls to action in a research community

to look at these issues in many ways. I will

say the same goes with wandering as well.

This is not easy research to be done and it

is easier to look at other things.

I will come back to my other point.

These are life and death issues. And

organizations like the National Institutes of

Health, the CDC. This needs to be perceived

of as critical as any other health issue.

109

DR. BIANCHI: Don't go away. I had a

question about what is known about the

biological research that has been done about

the attraction to water. In the non-desert

situation, which I agree with Samantha, that

would be the logical thing for anybody. So

many of these children are found dead in

pools. What is known? If we do not know a

lot, is that an opportunity to do research to

address prevention?

DR. LIPKIN: I cannot answer that and I

do not know if anybody at the table can. Lori

may have looked into this.

MS. MCILWAIN: There is no research on

that. That is the number one question we get.

Why do they go to water?

Based on the cases that we see, they are

trying to go to a quiet place and a

comfortable place.

110

DR. BIANCHI: You could argue that a cave

or something else would be quiet --

MS. MCILWAIN: We had cases where two

went to the library outside the library. That

sounds like a very safe case. It was not.

They were missing for several days.

Cemeteries. Garden nurseries. There were two

cases for that. They are going to quiet

places. I think with our younger kids, again,

those cases tend to skew younger. The

drowning cases. They go straight to water to

find that comfort a lot of times. For a lot

of them, that is their special topic too was

water.

MS. CRANE: I was going to ask about the

suicide survey. What I do not understand is

we have suicidality surveys of the general

population. There is a robust effort to

screen a general population for suicidality.

We have that data up on the NIMH website. The

111

CDC tracks it. Is there an extra hurdle that

is preventing us from tracking this in the

autistic population?

One of the things that I am concerned

about is I have heard from some researchers

who are telling me that when they look for

IRB approval, they are being told by the IRB

that autistic adults cannot consent to this

kind of study even though non-autistic adults

can. That is alarming. It interferes with our

ability to do research. I am wondering if

that is one of the reasons or if there is

some other reason why it is extra hard to

survey autistic people on suicidality.

DR. LIPKIN: I think in terms of why this

is getting attention in the general

population, but not in autism. I think there

has been a lack of awareness on this issue

just like there was with wandering and

112

elopement. What we are hoping to do is to

bring further awareness to this.

Are there problems in researching this

in adults? I would maintain that there might

be some obstacles, but they are readily

crossed. I think the obstacles at this point

just have to do with limitations and the

limited funding for such research and the

limited number of researchers in the field. I

think if we bring greater awareness to it and

perhaps support around doing such research,

we can get there.

DR. GORDON: I would just point out that

the CDC tracking of suicides in the general

population is made off of death certificates,

which obviously for many reasons would not

normally have a diagnosis of autism on there.

The comorbidity with autism is not going to

come easily from that. You are going to need

more in-depth stuff.

113

MS. CRANE: I thought there was tracking

of attempts as well.

DR. GORDON: That I am not sure about.

You might be right. But even then the

attempts are going to come from emergency

wards, et cetera, and not from in-depth

surveys that would reveal diagnoses like

autism.

We are going to go ahead then and take a

break as scheduled. We will resume here at 11

o'clock for committee business.

(Whereupon, the Committee members took a

brief break starting at 10:47 a.m. and

reconvened at 11:02 a.m.)

DR. GORDON: If everyone can take their

seats, we can get started. We are just about

ready. As I mentioned, we are going to resume

the meeting with committee business. I am

going to turn it over to Susan Daniels.

114

DR. DANIELS: Thank you. I have some

updates to share with you and then we will

dive right into business. Just acknowledging

the OARC staff in the work that they have

done.

First up is we wanted to introduce the

OARC newsletter. I think that most members of

the committee should have received this if

you are on our mailing list. But this is a

new effort from the office to try to keep

people informed of the work of the IACC and

partner organizations for us to be able to

share updates on new publications. We hope in

the future we will be doing some exclusive

new features such as videos and interviews

with people from the community. We are trying

to keep it brief, but hopefully filled with

information that is useful and interesting to

the community. We welcome your feedback. Hope

that you enjoy the newsletter and let us know

115

if you have any suggestions or if you want to

have something that you are doing be featured

in it.

Next, I just wanted to share with you

that we have an upcoming event in the fall.

We are going to have a seminar on autism in

girls and women. This is going to be a joint

seminar sponsored by our office, the OARC,

and the NIMH Office of Research on

Disparities and Global Mental Health.

The tentative date that we have set is

September 19. It is going to be in the NIMH

Neuroscience Center in Rockville.

The panel for this seminar will be Dr.

Kevin Pelphrey, who is a member of our

committee, Dr. Pam Ventola from Yale, and Ms.

Zoe Gross, who is from the Autistic Self

Advocacy Network, talking about different

aspects of this issue. It should be really

interesting. We are going to have it as a

116

live seminar where people can come in and see

us as well as on the webcast. Be looking out

for that. We will feature it in our email

updates in the future and it will be on the

website.

This is committee business. I just

wanted to give you an update on what is

happening with portfolio analysis in our

office. Our office is in the process of

preparing the 2014 and 2015 IACC ASD Research

Portfolio Analysis Report. I have already

been publicly sharing the data from the

report, but we are going to have the final

report hopefully in your hands at the October

meeting.

We are in the process of preparing the

data call for the 2016 data set, which will

use the new objectives from this new

strategic plan.

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I have a request for you. I would like

to have three to four IACC members who would

be willing to serve as volunteer consultants

for our team in terms of issues that we may

have trying to determine if we should be

adding new funders to the portfolio analysis

or if we have any other questions we are

trying to set definitions or anything like

that. We wanted to have a little bit of help

from members of the committee. Give that some

thought. If you are willing to be a

volunteer, it would not be taking up too much

of your time, but it would be good to have

some people who are willing to give us some

advice in those areas.

Then we are going to be moving right

into the strategic plan. This is just the

background, which you all know about the

strategic plan. That the new plan is covering

both services and research issues. And the

118

working groups have been working over the

last several months to prepare the drafts.

You saw them first in April and now they have

been edited. This is just the list of some of

the steps we have gone through.

At this point, the OARC staff has edited

the seven chapters and prepared all the other

sections of the strategic plan. Today's goal

is for the IACC to review and hopefully

approve the 2016-2017 IACC strategic plan,

but we will want to hear your comments and

thoughts about anything else that might have

been omitted or needs correction where we

would be able to approve.

There are 13 sections to the new

strategic plan, including an introduction, a

statement on the vision, mission, and core

values, an overview of ASD research funding

progress that is based on the portfolio

analysis work of the OARC for the IACC, and

119

then chapters for questions one through

seven, talking about the different areas that

the strategic plan covers, a section on

duplication of effort, which was approved

back in January, but we have provided here

again for your consideration and is required

as a part of the Autism CARES Act to be a

part of the strategic plan, and a budget

recommendation. There was a working group

that looked at the budget recommendation. We

will be presenting that information to you

here so that you can, as a committee, make a

decision about how you would like to do that

budget recommendation and then the conclusion

section.

We are going to try to go through all of

these. I know that you have the documents in

front of you and hopefully many of you have

had at least a chance to skim through if not

120

fully read the chapters that you have

received and we will take your comments.

I am going to start with the

introduction and ask if anyone has any

comments about anything that you think needs

to be added to it or any other types of

comments.

DR. REICHARDT: I just wanted to say that

I read the introduction. I thought it was

quite good.

DR. DANIELS: I should have acknowledged

that John did the first draft and then the

OARC has worked on it as well. We have put

together a collaborate effort on the

introduction.

MR. ROBISON: I was just going to say,

Susan, I think that you did a really good job

of weaving a lot of maybe disjointed ideas

that I sent you folks into a coherent whole

here. My comments on it really are limited to

121

just to details of it that I will email you.

I am pretty happy with what you all achieved.

DR. DANIELS: Thank you. You are welcome

to send small edits and those kinds of things

after the meeting. We would like to receive

everything by August 4. That is for the

entire strategic plan.

MR. ROBISON: I do not think I have

anything that needs to be actually discussed

here. Just little stuff.

DR. DANIELS: Great. It looks like there

are no more comments on the introduction.

Let's move forward to the vision, mission,

and core value statement. The OARC went back

through the previous vision, mission, and

core value statement. We took comments the

last time and tried to incorporate them. The

vision statement and the mission statement

are on this slide. Does anyone have any

comments on it? We tried to incorporate a

122

couple of ideas that came through in the new

plan to give it a little bit of a refresh.

But there is anything there that needs to be

updated?

DR. BIANCHI: The use of the term

consumer. Is that required? To me, that

sounds odd. In consumer, you are either a

person with autism and part of the community.

DR. DANIELS: We could change that

wording. That is from the original group that

put together the first strategic plan. They

always talked about consumer-based questions.

We could absolutely change that if the

committee likes that. I think they did not

want to use the word patient because they did

not – not everyone with autism or a family

member would consider themselves a patient.

Community member or community focus would be

fine. What do other people think about that?

123

MS. CRANE: I do not want to say

community in a way that omits the requirement

that we focus on the actual autistic

individual as well because that happens in

the autistic community. There are autistic

individuals and there are family members. I

think both are important, but I think we need

to call out both specifically.

DR. BIANCHI: How about if we say

individual and family focused. It is just

that consumer to me means that you are buying

something.

MS. CRANE: It is a very common – we are

using the mental health consumer community.

That is probably where it came from.

DR. DANIELS: I think that they were at

the time thinking about making sure that the

plan is going to help bring value to people.

I think maybe that is where they came up with

the word consumer. I think individual and

124

family member would be fine. Is that

agreeable to people at the table?

DR. GORDON: Please speak up if it is

not. There is a reason the word was there. I

do not want to exclude any contrary opinions.

MR. ROBISON: A couple of small points on

this. In the spirit of collaboration, I think

it has been a sore point with autistic

people. I think we should specify that we

will treat autistic people, we will listen to

autistic views. I do think that you are right

though in what you have written that we want

to listen to diverse views from all people.

But somehow, I think we should weave in there

specifically autistic views without

eliminating the others.

Another small change that I would

suggest is that in the sense of urgency, this

of course is what I have pushed for all

along. We will focus on what steps we can

125

take to rapidly and efficiently address the

needs of people living with ASD. But Louis

has always thoughtfully reminded me of the

need to not lose sight of the long-term game.

That we still need basic scientific research.

I think that deserves a sentence in urgency

too even though I thank you for putting our

community needs first.

In the ethics or equity portion, I just

would say that you had quality of life and

human rights and so forth. I would just put

quality of life as the first thing, not the

third thing.

DR. GORDON: I want to make sure we get

all those things, but I also want to make

sure we come back to this consumer focus.

Because the idea is that we want to have the

language approved by this committee

especially for this that we get these details

right. There was a proposal to change

126

consumer to community and then if you will a

counter proposal to change consumer to

individual and family focus. Let's do that

first and then we will go to the other issues

that John raised.

Are there any thoughts about those two

possible substitutions for the word consumer?

DR. BIRNBAUM: I do not think we want to

lose the word community. I would think we

might want to say individual family and

community.

DR. GORDON: Samantha, I believe you

brought up that you wanted to maintain the

focus on the individual. Is it enough if it

would say community focus that the rest of

that description says we will focus and make

a difference in the lives of people affected

by ASD or do you need it in the – let's get

it up there.

127

Consumer focus. The idea would be

community focus. We will focus on making a

difference in the lives of people affected by

ASD.

MS. CRANE: Can you tell me which

paragraph it is in?

DR. GORDON: It is the top paragraph, the

very top paragraph.

MS. CRANE: I think that is fine.

DR. GORDON: Are there any objections to

that? We will have community focus. Later on,

we will have a formal motion to approve the

whole document. That is why I want to make

sure we get the words right for this part

especially.

The second part of that – Susan, the

spirit of collaboration. What was John's

point there?

DR. DANIELS: Just incorporating

something about the importance of listening

128

to the views of autistic people and making

that a priority.

DR. GORDON: Does anyone have proposed

wording for that? This is the final paragraph

there, spirit of collaboration.

DR. BIANCHI: How about if we have we

will treat individuals with autism and others

with respect, listen to diverse views with

open minds?

DR. DANIELS: I think when John spoke

about it, you were talking about listening to

the actual views from people with autism. You

could say listen to views from people on the

autism spectrum as well as the – something

along those lines.

DR. GORDON: The third clause

"thoughtfully consider public input" covers

everyone else. If we have listen to views of

individuals with autism with open minds and

129

thoughtfully consider public input, is that

inclusive enough?

DR. DANIELS: Would you need to add

family members as well?

MR. ROBISON: Individuals with autism and

their families. That is fair.

DR. GORDON: Listen to individuals with

autism and their families with open minds,

thoughtfully consider public input. That gets

everybody else. Any objections to that

language?

The next issue that John raised, Susan.

DR. DANIELS: In the sense of urgency, he

mentioned adding something about the science

to the urgency. Although in the excellence

section, we do have some wording about

ensuring that we pursue scientific research

with the highest quality.

MR. ROBISON: Then maybe to address that,

we could just say we will focus on responding

130

rapidly and efficiently to the needs and

challenges of the community. Just shorten

that first sentence and then if we move right

into excellence, maybe then we cover the

long-term aim in the excellence paragraph.

DR. GORDON: The proposal is we will

focus – for everyone, this is the top

paragraph on the slide. Sense of urgency. We

will focus on responding rapidly and

efficiently to the needs and challenges of

the community affected by ASD.

MR. ROBISON: Needs and challenges of

autistic individuals and their families. We

will focus on responding rapidly and


autistic individuals and their families.

DR. GORDON: I do not have an objection

to that, but I want to make sure that we

recognize that we are changing the language

to be autistic individuals instead of

131

individuals with ASD. I want to make sure

that no one thinks that excludes anyone.

MR. ROBISON: I just hate the idea of

being disordered, Josh. I just do not like

it.

DR. GORDON: I respect that. I just want

to make sure that there are not contrary

opinions in the group.

DR. DANIELS: Commonly in the strategic

plan, we refer to people as people on the

autism spectrum. That has been a fairly

acceptable term. We could use that unless you

prefer autistic individuals.

DR. GORDON: Then it would be and

challenges of people on the autism spectrum

and their families.

MR. ROBISON: It is okay by me. What do

you think, Sam?

MS. CRANE: People on the autism spectrum

and their families are fine.

132

DR. GORDON: I am going to repeat now.

Again, we are talking about the top

paragraph. Sense of urgency. I believe I will

get this right. We will see. We will focus on

responding rapidly and efficiently to the

needs and challenges of people on the autism

spectrum and their families. That allows a

more quick and ready access to the next

paragraph that points to science. Any

objections to that language?

Were there other issues that John

raised? Are there any other issues with

regard to the core values and mission?

DR. KAVANAUGH: Could you just read back

the spirit of collaboration one more time? We

will treat others with respect, listen to

diverse views from individuals with autism

and their families –

133

DR. GORDON: I believe it was just listen

to the views. I want to make sure we get it

right.

DR. DANIELS: Listen to the views of

individuals on the autism spectrum and their

families with open minds, thoughtfully

consider public input, and foster discussions

where participants can comfortably offer

opposing opinions.

DR. KAVANAUGH: Is there any issue with

just leaving diverse views --

DR. GORDON: We can do that.

DR. DANIELS: Would you prefer to stay

with diverse views or the views of people on

the autism spectrum and their families?

DR. GORDON: Spirit of collaboration. We

will treat others with respect, listen to

diverse views of people on the autism

spectrum and their families with open minds.

Actually, we should move that "with open

134

minds" to listen with open minds to the

diverse views; otherwise, we are now

separating it out. I do not know. There is

some grammatical thing wrong there.

I am going to repeat it so we make sure

our note takers get it right. Spirit of

collaboration. We will treat others with

respect, listen with open minds to the


spectrum and their families, thoughtfully

consider public input, and foster discussions

where participants can comfortably offer

opposing opinions.

DR. FARCHIONE: I just have a question

about that because one of the things that we

do here is we listen to folks who are doing

research – stuff like that. It strikes me

that if we – on the one hand, we are saying

individuals with autism and their families

and all that. By doing that, it takes out

135

that academic piece that we also do. I feel

like just saying diverse views is sort of

all-encompassing and maybe does not need to

be qualified. I do not know.

DR. GORDON: The feeling was that we

wanted to ensure that this paragraph included

specifically listening to individuals with

autism and their families and that the public

input would encompass all other input. But

you are suggesting perhaps that we might need

to remind that this input would include that

from scientists or are there other

constituencies as well that might not be

covered by public input?

DR. FARCHIONE: I guess it is more just -

- I feel like the sentence gets really clunky

with adding all that extra verbiage. I just

do not know that it is necessary if the

phrase diverse views are encompassing enough.

If the folks who are on the spectrum feel

136

like it is not encompassing enough then that

is problematic. It feels clunky.

DR. DANIELS: I have a proposal here. We

could say we will treat others with respect,

listen to diverse views with open minds,

thoughtfully consider – something about the

views of people on the autism spectrum and

their families and the general community or

something that combines all three of those

and foster discussion. We would put all of

those in another clause, but we would diverse

views that would capture everything and say

that we are going to thoughtfully consider

the views of all these particular people.

DR. GORDON: Are there thoughts from – I

cannot remember if it was John or Samantha

who suggested the original insertion. It can

be challenging to do this without it written

up on the board. Do we have something we can

137

write on or can we change the language on the

slide?

DR. DANIELS: The slides are PDFs. They

cannot be changed.

DR. GORDON: Let me try to repeat it.

Samantha and John, let me know if you are

having trouble following it. Spirit of


respect, listen to diverse views with open

minds, thoughtfully consider input from

people on the autism spectrum and their

families as well as the general community and

foster discussions where participants can

comfortably offer opposing opinions.

I think what you lose in there is the

notion that you are trying to include diverse

views and perspectives of the individuals

with autism and what they bring to the table.

I think that is what the comments were

before.

138

As a scientist, I am happy being

considered part of the public, but I do not

mean to push the issue that way if there are

other ways.

DR. FARCHIONE: I understand that point.

Obviously, we need to consider a diverse

range of use from folks on the spectrum

because that is a diverse population. It just

probably needs some wordsmithing that I do

not know that we would be able to accomplish

in here.

MR. ROBISON: Is what we have settled on

then we will focus on responding rapidly and


individuals on the autism spectrum and their

families?

DR. GORDON: That is correct.

MR. ROBISON: Is that what we agree upon

then?

139

DR. GORDON: Yes. For the sense of

urgency, I think that was fine.

DR. BIRNBAUM: I do not want to forget

community. Autism and members on --

DR. GORDON: Community is another aspect

of the mission. The next slide has --

DR. BIRNBAUM: Community is important all

the time. Community is an inclusive word. It

includes individuals. It includes families.

MS. CRANE: We mentioned individuals and

– we are saying individuals and families in

there.

DR. BIRNBAUM: But we are not saying

community.

MR. ROBISON: Autistic individuals and

families.

DR. BIRNBAUM: I guess, John, I might say

that we have communities of people who are

important to be involved, to care as well as

the autistic individuals and their families.

140

We are never going to be where we want to be

if you do not involve the community.

MR. ROBISON: I think the community is an

– part of this thing – has been marginalized

all our lives. It is the autistic people.

DR. GORDON: I think that the community

is included. Maybe we have to make sure it is

in the spirit of collaboration. The focus is

now actually community focus. I think that we

handle well enough. That should cover it.

Let's move back though to this issue

that we still have not resolved, which is the

spirit of collaboration. It may be tricky,

but again this is the upfront language. I

would be much more comfortable having this

committee approve a final version today than

having to edit it. We really want to get this

approved today.

I am going to try and read it. Spirit of


141

respect, listen to the diverse views of


families, thoughtfully consider – why don't

we say thoughtfully consider community input

and that, I think, would include the

scientists, but maybe not – community input

and foster discussions where participants can


I am going to repeat that because it was

a little stilted. We will treat others with



families, thoughtfully consider community

input, and foster discussions where

participants can comfortably offer opposing

opinions.

I will repeat it. Spirit of




142

families, thoughtfully consider public input,

and foster discussions where participants can


DR. TAYLOR: Is it helpful? Do we need to

have listening to and thoughtfully

considering as separate? Can we simplify it

down and say thoughtfully consider the


spectrum, their families, and the community?

Do we lose something when we do that?

DR. GORDON: I think we do. Again, I am

coming back to the point that was raised by

Samantha. If not, it was John. Maybe both of

you raised it. We want to include the notion

that there are multiple perspectives coming

from the lived experience of being on the

spectrum and also the lived experience of

being a family member. That is separate and

distinct from community input.

143

MR. ROBISON: I like the way you read it,

Josh.

DR. GORDON: We will go with that

language. Any other comments on any of the

other points?

DR. DANIELS: Next, we are going to move

to the section of the overview of ASD

research funding progress. This was a section

prepared by the OARC based on the portfolio

data that was discussed with the committee

and the working groups.

Do you have any comments on this

section? It was basically a summary of what

we have learned from the portfolio where we

still see gaps where some of the gaps have

been filled under the last strategic plan?

DR. AMARAL: First, I did try and read

most of these sections. I just want to

congratulate you and thank you and OARC for

doing really a good job.

144

DR. GORDON: I want to make sure the

public could hear that. You are not quite

speaking into the mike. It is on, but you are

not speaking into it.

DR. AMARAL: OARC did a great job, very

clearly. I did send you some minor edits. You

can incorporate those later. But I did think

that at the end of this section, there needs

to be a point made that increased funding in

the gap areas should not come at the cost of

reducing funding for the areas that have

already made progress because there are very

few questions in autism where we know

absolutely the answer. It’s not a zero sum

game I guess. I do not have the exact text,

but something to that – should go in there.

DR. DANIELS: I think we can do that. We

do have the budget section as well where we

could reiterate that same point, which I will

be going over with you in a little while.

145

Any other comments here before we move

on to the next section?

DR. GORDON: Let me just ask the

committee if they are comfortable with the

notion that we would draft language. I want

to be specific about changes like this. We

will draft a sentence or two to that effect

and that will be part of the approved

document that we are going to vote on later.

Any discomfort with that?

DR. DANIELS: That was the plan if we

were going to wordsmith the entire document.

I do not think we will be done today. Then we

will be re-meeting in October to talk about

this again. Hopefully on things like the

mission and vision, they are very specific

language. But hopefully, we can take

suggestions from you and if there are

omissions or gaps here and there that we

146

could fill them in and be able to still

generally approve the document today.

Let's move on to Question 1, which is on

screening and diagnosis. The new question is

how can I recognize the signs of ASD, and why

is early detection so important. I have on

the slides the revised objectives. They have

been streamlined to be in a consistent format

and also to try to take care of any

redundancies between objectives to make them

all distinct. Do you have any comments on the

objectives themselves or any part of the text

there? Anything that was missing? Things that

need to be corrected or any other kinds of

comments on this chapter?

DR. KAVANAUGH: Susan, I had two minor

changes that I will just email to you where

HRSA was also involved in some activities

that are outlined --

147

DR. DANIELS: Great. That sounds fine. Do

you want me to actually read you the

objectives and go through them one by one or

are you fine with just looking at them on the

slides?

Any other comments about Question 1?

DR. MANDELL: I was wondering if someone

who was involved in writing it could help me

understand how the second bullet under

Objective 1 fits there.

DR. DANIELS: That was a part of what the

working group put together. They were

thinking about disparities issues in ensuring

that there is evidence that these

interventions work in diverse populations.

That is one of the parts of the USPSTF

recommendation.

DR. MANDELL: That is fine. This is sort

of a value statement, but it does not tell me

what to do. I wonder if similar to the way

148

that the bullets under the other objectives

tell me what I am supposed to do as a

researcher or a policymaker. It could be

reframed.

DR. DANIELS: Do you have a suggestion

about that? Does anyone here have a

suggestion on how that can be done?

DR. KOROSHETZ: I thought from the

wording that it was research needed to

develop early detection methods validated in

these populations, girls and intellectually

delayed individuals.

DR. MANDELL: That would be a reasonable

thing to say, but I am not sure how that

strengthens the evidence base for the

benefits of early detection. It sounds like a

disparities issue.

DR. DANIELS: Some of the other

objectives and then there is a new objective

I am going to be introducing to you about

149

girls. We do have other disparities issues in

some of the other objectives as in your

chapter, Question 5.

DR. MANDELL: I may be over thinking

this. Feel free to tell me to shut up. I want

this to get the attention that it deserves.

If we think that girls are not detected as

early as they should be or that people with

intellectual disabilities are not detected as

early as they should be because we do not

have the right tools or because the workforce

is not as attuned to their needs or because

there is some statistical discrimination that

goes on that is institutionalized in our

health care system, I would want to call that

out in the right place. This just does not

seem to call that out.

DR. DANIELS: We have the chairs of the

working group here in the room. I do not know

if they might want to make some comments on

150

that or if they have suggestions on how it

could be modified. We have Ann Wagner and

Alice Kau back here. Do you want to make any

comments?

DR. WAGNER: I do not know if I can add

to what the intent is. The intent is exactly

what you are saying. I think if there are

suggestions for how to word that differently,

that would be great.

DR. PELPHREY: David, your point is

partially the wording that mostly the

location. It does not actually strengthen the

evidence base, the benefits of early

detection even if we ran 10,000 studies.

DR. WAGNER: Is it a matter of

researching whether the screening – whether

the methods we have for early detection work

equally in all these populations? Is that the

question?

151

DR. MANDELL: That is a great question.

It would just mean that it would go under

reducing disparities in early detection.

DR. GORDON: I disagree because it is not

-- reducing disparities mean you have

disparities that you need to reduce. What we

do not know is whether we have disparities to

reduce or not although maybe we do know it. I

apologize if we know it, but maybe that is

why it is in Objective 1.

DR. MANDELL: If that is the case then it

would be to ensure that the benefit of

universal screening is equal among subgroups

with perhaps particular attention to girls

and people with intellectual disability. But

the way this is written is to improve early

detection and that there are these two groups

where detection is not as good as it should

be.

152

DR. PELPHREY: You want the disparities

issue or I think we want the disparities

issue to be highlighted elsewhere, but there

is a scientific question here that we do not

want to be lost, maybe two of them. One is we

need tools for early detection of ASD in

girls that do a better job because many of us

believe that we are missing a population. We

want research directed at that.

And then we also want to test the

question of whether there are differences in

outcomes as a result of that early detection,

which interfaces with the idea of with early

detection comes early intervention which

reflects back into the basic underlying

biology. Are there different sensitive

periods in boys and girls that might offer

better or worse opportunities for

intervention? There are three or four

interrelated scientific questions.

153

DR. MANDELL: All those are awesome

questions. When we think about at the end of

the year as we are looking at what was funded

and the extent to which it fit with the

objectives. I think we should be calling out

things that – with that in mind. What is the

goal? How are we meeting that goal? Those are

all three great questions. You just

articulated how this could fit in Objective

1, 2 or 3. I think we just figure out where

it belongs.

DR. WAGNER: I think that for this one I

think the intent was for the second bullet to

be a follow on to the first one, which is

asking for developing methods. I thought that

the second bullet was just meant to say in

doing that, we want to make sure we are

taking into account the differences in these

special populations such as girls.

154

DR. MANDELL: That is great, but

Objective 1 is not about improving early

detection. Objective 1 is in direct response,

I think, to the preventive task for saying we

have to show that there is a real benefit to

early detection to early detection leading to

treatment, leading to improved outcomes. Are

we saying in the second bullet that we need

make sure that that pathway is clear for a

lot of different groups, especially girls and

people with intellectual --

DR. WAGNER: The taskforce specifically

talks about disparities.

DR. GORDON: I think if we just put these

designs must pay attention to special autism

populations such as girls and intellectually

delayed individuals, would that be good?

DR. MANDELL: If that is the intent then

that makes perfect sense.

155

DR. WAGNER: I think that is the intent.

There is a big working group. If somebody

remembers it differently, please speak up.

But I think that was the intent for this. But

if you are raising something that is missing

from the whole thing then that would be good

to hear.

DR. DANIELS: With that type of a

language change, do you think that would

solve that issue? You have not seen all the

rest of the objectives as yet either. There

are places where disparities and girls are

prominent in other objectives as well.

MS. CRANE: Can I just interject and get

to a more simple thing? I am not sure why we

are saying intellectually delayed

individuals. I think probably the more

accepted language is individuals with

intellectual disability. Is there a strong

feeling in favor of intellectually delayed?

156

DR. DANIELS: That is fine. That is

actually the language we use throughout the

rest of the plan. It is individuals with

intellectual disabilities.

MS. CRANE: I get very distracted by

that. It is hard to talk about the rest of it

because it is leaping out at me.

DR. REICHARDT: I just wanted to say that

I have some concerns about the way this is

going. I think you guys generally did an

excellent job in editing. But I think that

either there should be another set of

conference calls with the committee members

and perhaps both of these, a subgroup,

perhaps the chairs of the committees just

discuss this because I have equal discontent

with many of the other sections. I can see

the way the clock is running. I am just not

sure it is as close you think. I think it

157

might benefit from another round of

discussion.

DR. GORDON: Can you be more explicit? I

am not exactly sure –- I want to know more

about why you feel it is not ready.

DR. REICHARDT: It is an excellent

review, for example, but there are issues

that I think are quite important that are not

brought out, not specific to this section. I

thought the section differences discussion

was quite inadequate frankly in terms of what

we know about various possible mechanisms.

I think there are issues like the ups

and downs of various animal models, which are

simply not discussed.

There are a number of issues about the

importance of various genetic efforts, for

example, GWAS, whole-genome sequencing versus

exome where the big bucks are and where the

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opportunities are. I did not see that in the

sections that I read.

I think the text reads terrifically I

should say. I think, Susan, you and your

colleagues have done a great job in cleaning

up our poor use of English and grammar and so

on. I think at the end of it, it would still

– after you did this, there was no effort to

go back to the committees and I do not mean

that as a criticism. That is really on

Walter's and my responsibility, not yours,

but I suspect that is true of everything.

I also thought that – my personal

opinion is some small subgroup should

probably just be charged with taking a look

at the whole thing because we all know that

the larger the number of people that are

involved, the less responsibility each member

of that committee feels. That is actually the

reality of life, which is why people say you

159

do not want advisory boards that are more

than five or ten. We clearly are a much

larger board. I am not advocating that this

committee as a whole not finally have the

opportunity to review or accept things, but I

think there are some procedures that might

make this a better document.

DR. DANIELS: Under FACA rules, of

course, the entire committee must be involved

in the approval. I have put out a time for

comments until August 4, which I do not know

if you would want to extend that more. We

could take more extensive written comments,

do another revision, and then send it back

out to the committee to review again or to

have just the chairs look at it again and

then bring it back for October or we could

try to approve on the phone. We could do

that, but we would have to have a quorum of

160

the committee on the phone ready to do that

work.

DR. REICHARDT: Personally, I would be

more comfortable with October. I think what I

would personally urge is a two-step process

where you have another set of conference

calls that you had with each of the

committees on the questions because I think

very few of the members on the committee have

taken a seriously look at this after you guys

cleaned it up and then perhaps some subgroup,

but then with final approval in October.

DR. DANIELS: This has not gone back out

to working groups. The working groups were

originally set to be completed and done with

their part of the process and it was going to

be in the committee's hand from here forward.

But if we need to, we could reconvene the

working groups.

161

I feel though that among the committee

members, you probably have the resources

within the committee to complete this without

going through a whole new set of committee

working group calls.

MR. ROBISON: I think even recognizing

valid concerns of Louis and the others, I

just think that you guys have done a good job

pulling this together. We already six months

late. We have faced delays from the election

and changes in the committee and all these

things. My vote is to just get it done. Let's

do it with what you have here and now.

DR. DANIELS: This document is setting

priorities research and services that are

important. Until they are done, they really

cannot be advising anyone. That is part of

the urgency. I would have liked to have sent

back the revised version for people to review

at more length. But given the urgency of

162

trying to get the document done, we were not

able to do that. But I am happy to add more

procedures if you like.

MR. ROBISON: Just remember folks, it is

only a few more months and we are going to be

doing this again.

DR. GORDON: I would suggest that we

continue with the review of the chapter by

chapter efficiently. And then we consider the

question of whether to accept this document

despite any deficiencies that Louis or others

might recognize with it. We will take a vote

of the committee at that point as to whether

we need to revise it more significantly and

approve in October or do so now.

DR. DANIELS: It sounds good. Question 1,

were there any other substantive comments on

the content, major areas that have been

missed, or anything that was controversial? I

am not seeing anything around the table. It

163

looks like really it was just that second

bullet of Objective 1, which we could

continue work on a little bit.

Then I am going to move to Question 2,

which is about the underlying biology of ASD.

In this question, we have three objectives. I

would like to also share with you something

that OARC put together. We proposed a cross-

cutting objective that does not necessarily –

it could sit in Question 2, but pay attention

to the word cross cutting. We noticed that as

we read the entire strategic plan from cover

to cover that the committee and the working

groups had highly prioritized research on

women and girls throughout the strategic

plan, but there was no single objective that

called this out. And the objectives are what

is used by the agencies to help with their

priorities. We wanted to propose to you

potentially putting the ideas of the full

164

committee together in an objective that would

focus on these issues.

We put together some language here that

you can review, but it would be to support

research to understand the underlying biology

of sex differences in ASD, possible factors

that may be contributing to under diagnosis,

unique challenges that may be faced by girls

and women on the spectrum, and develop

strategies for meeting the needs of this

population with a few bullets. But we thought

that captured much of what was said

throughout the strategic plan.

The idea here would be why we have

called it cross cutting is that we could

still code individual projects that were on

these diverse topics to their question in the

portfolio analysis. It would not be that all

the dollars would be counted under Question

2. They would be counted where they should be

165

counted, but we wanted to coalesce the idea

of doing research on girls, research and

improving services for girls and women into

one place. I wanted to see what the committee

thought about that.

DR. REICHARDT: I am very supportive of

that concept.

DR. MANDELL: I like it too.

DR. TAYLOR: I do too. Why is it under

Question 2 and not --

DR. DANIELS: We could put it anywhere.

It really does not have to sit anywhere. I

just arbitrarily put it at the end of

Question 2. It could be at the beginning. I

did not want it to fall off the end and not

be seen by anyone. I thought throwing it in

the middle might be a good thing. We could

put it at the end of Question 1. It has a

component of each of these questions in it.

166

If you have a better suggestion, I am open to

that. I just did not want it to get lost.

DR. PELPHREY: Obviously, I love it. I

would suggest just in terms of serial

position. The beginning and the end would be

great, but certainly the beginning probably

so it is clear to the reader that it belongs

in each of the areas.

DR. GORDON: Separately before Chapter 1

-- before Question 1. Before Question 1.

DR. DANIELS: We will figure something

out in terms of how to do that. It sounds

like we have some support for adding this

cross-cutting objective. I just wanted to

point that out so that we will be focusing

research in that area to that objective. And

the other objectives here again have been

revised just to make the language a little

bit more standardized, trying to show action

like what is needed in each of these areas.

167

Were there any comments on the content

of Question 2? Any areas that you felt had

been missed or needed more explanation?

DR. KOROSHETZ: -- most of the edits you

guys did were taking things out. We analyzed

pretty carefully. MEGHAN did. I guess we were

kind of comfortable that the stuff that was

taken out was referenced in the shorter form.

If you have objections to taking things out,

the question to you is do you take things out

because of space. Is that the issue?

DR. DANIELS: We were trying to get each

of the questions to be sort of uniform

length. We did not want one question that is

three times as long as another question.

There was some of that and plus readers just

have a hard time the longer it gets. We tried

to move anything that could be put into a

reference rather than having to be explained

in very great detail. Also, just being lay

168

friendly and not getting into too much

extreme detail about molecular function and

so forth.

DR. KOROSHETZ: Of the things that you

feel were taking out that you could argue to

put back in --

DR. DANIELS: If there are certain things

that you think because of the edits have been

missed in some way, you could send us some

comments.

DR. KOROSHETZ: -- some things that are

incredibly diminished.

DR. REICHARDT: I read the new document,

but I did not compare it to the old. I

probably should not say anything at this

point.

DR. GORDON: Just to reiterate three

areas, I think two of them pertain to Chapter

2 and the third to – Question 2 and Question

3. Sex differences may hit on this.

169

DR. REICHARDT: Sex differences – I think

there is a chance to work on. I should say

there are certain issues, which were not

really discussed. You point out that it is

very unclear which animal models are

appropriate – this is a big – I consider this

a very big issue. I consider what types of

risk analyses should be done particularly

with regard to genetics where I think the

questions are pretty clear. It is a very

significant issue where the biggest bang for

the bucks is. We are charged with spending

money efficiently. And the sex differences,

as I said, I think those are the three things

that I was just not happy with as I read

through. It did not seem to me that is

reflected a current knowledge of the bases of

sex differences --

170

DR. GORDON: To bring up the point that

Walter was making, were those sections that

were taken out --

DR. DANIELS: No entire sections were

taken out. It is just that the language was

edited down. If there is a point that you

think was really important that got edited

out, you could send us a comment and let us

know to try to put it back in.

DR. REICHARDT: With the exception of the

sex differences, which I think --

DR. DANIELS: Did you read the question

through sex differences information? There

was a comment you made at the last meeting

that we did not actually understand. Maybe

you could follow up.

DR. AMARAL: I just wanted to say that

some of this is covered in Section 3. I think

risk assessment is in there.

171

I thought the animal models actually in

Section 2 were actually quite good. It laid

out the ambiguity of certain animals not

being appropriate for some studies, but

highlighting potentially. As a forward-

looking document, the potential of using non-

human primates, for example. That is still in

there. I thought that was actually very good.

DR. REICHARDT: Maybe I am too much in

the weeds, but I thought, for example, the

challenges of adequate numbers with primates

– there are issues like this. The challenges

of level of development and reproducibility.

Many brands or IPS – these were certain – one

should be clear about what limitations are

major caveats to approaches as well as –

otherwise, we are just not being critical.

Anyway, that is a personal –

DR. KOROSHETZ: Maybe you and I can just

sit down at lunch and try and go through it.

172

DR. DANIELS: You can always send things

to us after the meeting.

DR. BIANCHI: I just wanted to raise a

point about Objective 3 under Question 2,

which says support the creation of large

cohorts, characterized both phenotypically

and genetically with complete health records

from early embryogenesis through adulthood.

Your records when you were an embryo are in

your mother's health record.

First of all, you probably want some

pre-conceptual genetic screening as well, but

I can envision within the next five years

that there will be specific genes identified

that may come as part of a pre-conceptual

genetic screen that the mother and the father

get and it might be interesting to know

particularly variance.

But we somehow have to get at the issue

that you want the complete health records of

173

the pregnancy as well as the individual. You

want the mother's records.

DR. GORDON: It does not specify. It just

says complete health records. It does not say

who.

DR. BIANCHI: Yes, but I think you are

talking about an individual. I do not know.

To me, it seems imprecise, but that is the

world I live in. The mother and the child.

DR. DANIELS: If we added something that

said something about including pre-conceptual

genetic screening data or something like

that.

DR. BIANCHI: -- conceptual screening

data as well as prenatal records or something

like that.

MS. CRANE: I am sorry. This is Sam. I am

kind of alarmed by the prospect of pre-

conceptual screening data. I think that a lot

of people on the autism spectrum are a little

174

alarmed by that too. I do not oppose genetic

research, but I think that people are going

to read that as a gesture towards trying to

move towards universal pre-conceptual

screening for autism and that is going to be

politically charged. If we could avoid making

that implication somehow that would be

helpful.

DR. BIRNBAUM: I think the science is

beginning to move that fathers matter. We are

spending a lot of time focusing on what

happens before birth, for example, in utero

where you focus both on the mother and on the

developing embryo fetus, but in fact there is

more and more data showing that both for the

mother and the father that it is not only

their genetics. It is also their

environmental exposures and defined broadly,

may make a big difference. That is true for

everything.

175

DR. GORDON: I would argue though in

support of the notion that the language read

by the community writ large matters. Again, I

will point to complete health records.

Complete health records to me mean all of

that. It means the age of the father. This is

an objective to support research. It is not

described in the details of that research,

which could be defined by the research

funders. The point that Samantha is raising

is putting that language into here

unnecessarily raises issues and that just

complete health records or maybe with some

minor things added defines what we are

talking about.

DR. BIANCHI: I appreciate your

sensitivity. What I am just trying to get at

is the capacity to be able to collect

information if it is available. Maybe we

could revise this to phenotypically and

176

genetically with complete health records from

pre-conception through adulthood. Pre-

conception means everything, whether you took

prenatal vitamins before you got pregnant,

not saying pre-conceptual genetic screening.

To me, what I reacted to was early

embryogenesis. Who has the records on early

embryogenesis? If we just say complete health

records from pre-conception through

adulthood, that would be my proposal.

MS. CRANE: I would like to finesse that

a little bit still. Maybe even just saying

health records of the child and parents might

help. When we say pre-conception, I know that

a lot of people in the autism community when

they are hear that, they are going to think

it has started. They are going to try and

prevent us – this is a eugenic campaign. I

know our community and I know that that is

going to happen.

177

DR. KOROSHETZ: (inaudible comments)

MS. CRANE: We could talk about parental

health. That could be a way of mentioning

things that are – parental health is

relevant. It will not necessarily be read in

the same way.

DR. KOROSHETZ: -- phenotypically and

genetically complete health records of

parents and the child from early

embryogenesis through adulthood.

DR. BIANCHI: The embryo is in the

mother's record. It is confusing. We do not

really know a lot about the embryo unless you

have pre-implantation genetic testing. You

might know about the fetus through

ultrasound.

I think it is cleaner the way Samantha

suggested that. Complete health records from

the child and his or her parents. That is

what you want.

178

DR. GORDON: Strike the time period.

Complete health records from the child and

parents.

DR. KOROSHETZ: -- the medical record is

not the most important part – the most

important part was longitudinal

phenotypic/genotypic studies.

DR. BIANCHI: Right. You want to capture

the pregnancy. You also want to capture the

father's exposures.

DR. KOROSHETZ: But just to note, medical

record was a minor component of this.

Phenotype/genotype medical records.

DR. DANIELS: All right. Any other

comments on Question 2? We are running short

on time probably because we are already into

our lunch break.

DR. GORDON: Susan and I will look at the

afternoon schedule and figure out where we

can continue this because I think there have

179

been comments at each chapter. Although we

are trying to get this done this time, maybe

we will not be able to. But it is apparent

that we need to spend more time on it than

just the hour we allotted. Susan and I will

figure out what we can do this afternoon. We

will break now for lunch and resume here at 1

o'clock.

(Whereupon, the Committee recessed for

lunch at 12:05 p.m. and reconvened at 1:10

p.m.)

DR. GORDON: Good afternoon. We are going

to get started. Just a quick organizational

note regarding timing. We are going to

proceed with the public comment session from

now until 2:15. At 2:15, we are going to have

the presentation by the Madison House Autism

Foundation. We had 45 minutes for the

presentation and a half an hour for

discussion. But in the interest of resuming

180

the discussion on the strategic plan, we are

going to cut that short a little bit to one

hour total. That will end at 3:00. We want to

go 2:15 to 3 o'clock. We had initially an

hour and we are cutting it to 45 minutes.

At 3 o'clock, we are going to take our

afternoon break and we will resume at 3:15

with the strategic plan discussion, which we

hope to be able to finish in an hour. That

will be 4:15. We will have then an

abbreviated discussion of the summary of

advances, 3:15 to 3:30. We can always push

off discussion if we do not conclude until

next time because that is really an annual

thing that ends in January.

And then from 4:30 to 5, we will have an

abbreviated round robin. That is how we will

finish. Hopefully, the strategic discussion,

but I did not want to cut into the public

comment session especially after last time.

181

We had fruitful discussions in the light of

the public comments.

We are going to go ahead and get

started. We have four oral comments and then

we will have a summary of the written

comments. We are going to start with the oral

comments. We have allotted a total of five

minutes for each of the presentations. And

then in the spirit of last time, if the

committee would like to discuss in between

the public oral comments, we will take a few

minutes to discuss each one. If nothing comes

up immediately then we will wait until after

the written comments where we will continue

to have discussion. There will be

opportunities in between the oral comments

for urgent discussion as necessary and then

at the end of the written comments for

discussion of the public comments.

182

The first oral commenter is Thomas

Frazier, Dr. Thomas Frazier.

DR. FRAZIER: Thank you, Josh. Thank you

and thank you to the committee for the

opportunity to provide comment. For those of

you who do not know me, I am Tom Frazier. I

am the chief science officer at Autism

Speaks. I am very grateful for this chance.

I also want to acknowledge Geri Dawson

and Rob Ring for their prior leadership at

Autism Speaks Science. I would also like to

thank Louis and the Simons Foundation as well

as Alison Singer and Alycia Halladay at

Autism Science Foundation and the Simons

Foundation because they both reached out and

offered to figure out ways to be

complementary and collaborative as we move

through and try to develop a strategic plan

for science.

183

I am going to spend a few minutes giving

an update on the science portfolio at Autism

Speaks. I am going to start off by mentioning

our MSSNG, which is a whole genome sequencing

project. It is also open science. We are

trying to get as many people interested in

using the data as possible with the ultimate

goal of getting up to 10,000 genome

sequences. It is a public/private partnership

between Google, SickKids and Autism Speaks.

And the data are fully available for folks to

access.

We expect the database five release in

the fall, which will include up to 8000 whole

genome sequences available on the Google

Cloud. Currently, 5000 are available.

As I said, we are trying to get as many

folks to access and we are seeing access

increasing over time with more than 100

investigators currently.

184

The MSSNG community portal will be

launching hopefully in the September/October

timeframe. That portal is really designed

around trying to allow individuals and

parents to connect with other individuals

around their genetic sequence data as well as

to access advice in genetic counseling.

The Nature Neuroscience paper by Steve

Scherer's group is a good example of the

power of this kind of approach. The paper

talks about identifying 61 risk genes

associated with autism, including 18 that

previously did not have high confidence for

their association.

More importantly even than that is that

many of these genes are clustering into

distinct biological pathways. We think this

is exciting because several of these genes

and pathways have pharmacological targets

already identified.

185

Before I move on, I just want to mention

that there are a number of exome sequencing

efforts out there. We really see MSSNG as

being an opportunity to complement those

efforts and allow us to look at non-coding

variation in addition to what is already

being done.

The Autism Treatment Network, as many of

you know, has 13 sites in academic medical

centers around the US and Canada. It is co-

funded by HRSA and I want to acknowledge that

it is really a dual network with the AIR-P

network, Autism Intervention Research Network

on Physical Health. There have been a number

of milestones over the last year that has

been achieved. I am not going to be able to

go through all of them, but I want to

highlight a couple here.

One is more than 320,000 downloads of

health care toolkits, which we think is

186

exciting because it means that this knowledge

is getting disseminated to providers and to

the community.

We also want to acknowledge the

substantial training efforts of the network

to train medical providers and also to

provide care coordination for families.

I would be remiss if I did not talk

about our Weatherstone Predoctoral

Fellowship. These fellowships have been

around since 2009. They fill a very important

hole in the space for these predoctoral-level

individuals. We want to attract really

innovative folks, people who are dedicated

and will become dedicated to autism science.

We have eight additional fellows that were

approved yesterday. We will have a full class

for 2017. And a number of these fellows

provide blogs and information on our website

187

that I think folks should access if you have

a chance.

We started the strategic planning

process and part of that process is our

survey. Some of you have may already

participated in that survey. We are trying to

get as many people to participate, including

a full range of autism stakeholders. We have

had a Medical and Science Advisory Committee

meeting last week that was very productive

and moved this forward on our strategic plan.

As I mentioned, we really want to be as

complementary as possible to other funding

sources. We are going to be presenting that

plan to the board in October 2017.

The survey. We have more than 5000

responses to date. A number of moms have

responded although we do have good numbers in

other categories in relationship to autism. I

188

am just going to review a couple of things

here.

First, there is no slide on this, but we

did look at basic versus applied science and

we see that both of them are being rated in

the important range, which I think is

encouraging. It shows that at least on the

basic science side, people are becoming more

aware of the value of this, the potential

value of this for our autism.

We do see some variability across

specific topics. Some of that may be due to

the way that we frame the question. I think,

in general, the positive here is that many

people are seeing these areas as being

important or very important to the future of

Autism Speaks Science.

We are going to be collecting additional

responses and analyzing them by the role and

189

relationship of the individual to autism, and

we hope to disseminate that information soon.

And then I am going to end by just

mentioning that we see our role as changing

slightly. Our new role is going to be to see

novel projects. We still want to cover the

full space from discovery to solutions where

we know that we need to be more targeted. And

we also know that we might have a unique role

in funding very practical, more immediate

projects that can bring relief and help and

increase quality of life to individuals and

families.

We have also talked about transitioning

our Autism Treatment Network to a Learning

Health Network with the clinical trials'

capacity. We, of course, want to include

advocates both self and family advocates in

our review process and we have been doing

190

that including through our most recent

Weatherstone Fellowships.

I will just end by saying that we see a

unique role for us in connecting the

community to research findings and research

findings to the community. Thank you.

DR. GORDON: Thank you, Dr. Frazier. The

next oral commenter is Carol Weinman. If you

would go ahead and go up to the podium. Let

me just ask while she does so if there are

any urgent questions or comments from the

committee; otherwise, we will proceed. Again,

we will have a chance to discuss at the end.

MS. WEINMAN: Good afternoon. I am

honored to be here. For those of you who do

not know me, I am an attorney. I have been a

criminal attorney for over 25 plus some

years. I started as a prosecutor and then

became an expert in the area of autism. I

have a son on the spectrum. I then became

191

certified as an autism specialist. I have

brought the two together.

I am here to speak to you about today –

my biggest challenge is going to be keeping

this to five minutes. Because of my passion

about this issue of crime in autism.

What I see in my practice – I represent

offenders who are on the spectrum. We hear a

lot about victimization, which is a big area

and certainly an important one. Then we see a

lot about wandering. But what a lot of people

are not aware of is how many of these

individuals are becoming criminal defendants

and offenders.

The reason for that is many. Many of

them, which I speak about often, are the

characteristics that are unique to this

population. They tend to bring their

attention to police officers and law

enforcement.

192

They often do not understand the

consequences or the behavior that they are

doing and that it is considered criminal.

They are finding themselves being arrested,

processed, and then – we have them from the

front end. We have the ones that are getting

arrested. Then we are dealing with them all

the way through the criminal justice system

to then the issues that come up with being

interviewed by the police and then in the

court room if they make it to trial. The

issues come before us about them being put on

the witness stand and some of the concerns

with that.

The greatest way to approach this, as is

many of the things in this area, are training

and education. There needs to be a heightened

awareness of this issue and then how to deal

with it.

193

In terms of how to deal with it, number

one, at the front end are the police

training, which I know was mentioned here in

terms of elopement. It is about how we train

the police so that when they see this, they

maybe know that it is a person with autism.

The person is identified. They treat them

differently. Maybe they will not take me

through this system. I have had cases where

they are not getting processed.

And then we have to train the

prosecutors so that they understand why it

should not be handled and charged the same

way as any other criminal defendant. That is

what I deal with very much in my work and it

has been very challenging, but also very

rewarding.

But we need to do it on a much bigger

scale in terms of training them to understand

that this is not what it looks like. That is

194

what I deal very much with prosecutors and

the judges are that they just do not have any

understanding of autism. Once they can be

made to understand it better and to see that

there is no criminal intent to commit a

crime.

And what they really want to know is

will this person offend again. In my

experience, very few offend a second time.

And the reason for that is because once we

teach these offenders from the other side

what they did was wrong and take steps to

prevent it from happening again and more so

for them to understand that it is considered

criminal, they do not do it again. A lot of

it is that they did not even know that what

they did was wrong or socially inappropriate.

I see a lot of sex-related crimes. And

reasons for this are obvious because they do

not have enough education in that area

195

either. Many of them take to the Internet.

What is happening with that is that once they

take to the Internet out of curiosity, they

are on the Internet and all of a sudden

before they know it, they pushed a button and

they are downloading child pornography.

Even though the percentage of

individuals and in my experience, mostly

males, that are getting arrested for these

kinds of crimes maybe much less than

individuals on the spectrum that you are

seeing in other areas or arenas we are

talking about. But the consequences are so

severe that even though the percentage may be

less, it is a really serious issue.

Once they get into the federal system,

many of them are getting convicted or doing

pleas for child pornography and having to be

registered as sex offenders. There needs to

be some changes in the law there too, but

196

that is probably going to be down the road in

terms of the registry issue.

But more importantly, you have this

vulnerable population. They have already got

so many challenges that they are facing up

against and then on top of that, we are going

to give them a criminal record, which changes

their entire course of their life.

My job has been to prevent them from

even getting a criminal record, but it is

also raising awareness, training,

understanding. That is my five-minute mark.

Thank you.

DR. GORDON: Thank you very much for

raising this important issue before us. It is

very helpful to hear those comments.

Our next oral commenter is Mary Jo Lang.

Dr. Lang, if you would move to the podium.

Let me just ask if there are any comments or

197

questions, committee members, regarding that

last comment while Dr. Lang takes the podium.

DR. KOROSHETZ: I guess the question that

comes to mind is is there data out there –

are there publications in law journals that

we should be looking at that would help us

move to the next step?

DR. GORDON: Are there folks who are

aware of data regarding involvement with the

justice system and individuals with autism.

DR. DANIELS: There is some published

research, but I do not have it with us right

now.

DR. GORDON: That is something for us to

follow up in future meetings.

MR. ROBISON: I would just offer

something for committee members to think

about. Some of you know that I also serve the

judiciary branch of government as an expert

in autism in criminal cases. You just asked

198

are there studies, for example, in journals

that we could turn to. One real problem in

unraveling the issue of autism or other

psychiatric conditions in serious crime is

that very often the records of autism or any

psychiatric condition are sealed. A person

who is an expert working on the legal case

may know about that. Such a person may have

worked on other cases, as I have and know

about those things, but we cannot speak about

them or publish on them. It is a very

difficult situation because it is a thing

that really concerns me. I agree. She is

right to be bringing this up, but I could

not, for example, tell you of my own

experiences on that. I do not know how to get

around that problem other than maybe some

governmental answer in the future.

DR. GORDON: Good point. Thank you. Dr.

Lang, if you would go ahead.

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DR. LANG: I want to thank this

prestigious audience for having me speak for

a few minutes, but I am also very honored to

follow a defense attorney as I have been

expert witness and I know what that is like.

But I want to speak about antecedent

management before the student gets such a

situation where they need to be incarcerated.

I am changing my initial remarks with

something a little different.

First of all, one of the problems in

autism is just the teachers are not prepared.

I have a school that I started. We are now up

to 100 students. We have everything that you

can imagine. They have art, music, and all

that stuff. The problem is the teachers who

come from the universities may have had a

course. A course does not make you understand

and apply your knowledge to a very

complicated situation. It is not only the

200

student, but it is the parent, the parents

who are grieving, who come in just storming

and raging. It is all your fault and why my

child isn't cured. I am just yelling yes.

What you say is they are just angry.

There is limited mental health resources

for parents who learn to deal with this. Many

of them are impoverished. Even those that

have resources do not fare well when they

have a child with autism or a disability.

By the time you have dealt the child – I

will tell you how bad it is. The school I

started serves children that are moderate to

severe. Do you think the school district

sends me students who are Asperger's and are

on a diploma track? Absolutely not. I get the

student that have been tied up and handcuffed

in the back of a public school classroom or

have been abused or a student who has broken

the speech therapist's arm in speech therapy.

201

Then they call up and say Dr. Lang. We are in

an emergency. You have to do something. I

have to work with these. I call myself the

emergency room for the school districts.

If this happens at a very young age, you

can imagine by the time the child becomes an

adolescent and you are ready to transition to

the workplace, you have a very difficult

situation in educating the public. If you do

not know about autism by now, you have not

listened to the news. But they do not really

want to necessarily integrate them into their

office. They do not understand what it will

take, how much of their resources. There is a

whole host of community involvement and

activities that are necessary and education

that has to take place.

To support my attorney friend even more

because I have spoken on the issue of

sexuality and presented at the INSAR

202

organization when they had it in Spain. I did

the research so I could go to Spain. The

issue is nobody addresses it. If anything is

going to keep you out of the workplace and

accessing public benefits whatever they are,

parks, it is sexuality and the

inappropriateness because they do not

understand it and neither do the parents. The

parents do not talk.

How many neurotypical parents speak to

their neurotypical children about how many

times they are going to masturbate during the

day? I had to get over that and saying those

kinds of words. But they are normal behaviors

and you have to teach it in an appropriate

way. That is one thing that will keep them

out of jobs and being productive citizens and

having a quality of life that they should

well deserve. Thank you.

203

DR. GORDON: Thank you very much. That

was really wonderful and compelling

description of the importance of working in

the schools.

While our next commenter, Margaret

Gautier, comes to the podium, I will just ask

if there are any responses or comments from

the committee.

We will go ahead with the written

comments and if the oral commenter comes in

before we move on then we will have her

comment then. She might be on campus

somewhere. Hopefully, she will show up later.

Now, we will have the description of the

written comments by Karen Mowrer. Dr. Mowrer

is a science policy analyst in the Office of

Autism Research Coordination at NIMH.

DR. MOWRER: Thanks. Hi everybody. Since

the April meeting, the IACC received written

public comments from 17 commenters. For the

204

purposes of this presentation, we have

organized these under six broad topics and

the committee has been provided all of the

comments in full, but I will be summarizing

them briefly here.

The first topic was autism research

priorities. We had nine comments on that

topic. Ms. Noelle Aloe, Ms. Caryn Harb, Ms.

Joni Iqal, Ms. Lauren Harb, Ms. Gina Jaber

and Mr. Marc Spilo asked the NIH to fund

research on the use of an existing anti-

parasitic drug called suramin as a potential

treatment for autism.

Dr. Stelios Georgiades provided links to

his recent publication and additional

information on the topic of autism

heterogeneity over time. He offered to keep

the IACC updated on his research.

Dr. Eileen Nicole Simon asked the IACC

to discuss her comments, describing potential

205

links between autism, disruptions in language

development and complications resulting in

brain injury such as umbilical cord clamping

and asphyxia at birth.

The Autistic Self Advocacy Network asked

the IACC to prioritize ASD research on

lifespan outcomes, co-occurring conditions,

support and services, assistive technology,

diagnostic disparities, and the prevalence of

autism in adults. ASAN also urged the IACC to

promote the involvement of autistic adults in

the research process.

The second topic was the role of the

IACC. We had five individuals comment on this

topic. Ms. Marian Dar thanked the IACC for

screening the film As One: The Autism Project

in recognition of autism awareness month. Mr.

Nathan Olson thanked the IACC for the

positive experience he had when he presented

an oral comment during the April 2016 IACC

206

meeting. Mr. John Best expressed general

frustration about the IACC.

Dr. Eileen Nicole Simon would like her

comments discussed rather than only

summarized. She requested that more time be

scheduled for the discussion of public

comments, that the IACC be required to

discuss all of the written comments, and that

the discussions be moderated by IACC members

familiar with each topic.

Mr. Dwight Zahringer feels his comments

from previous meetings have not been

addressed. He also recommended that the IACC

facilitate a survey of parents of autistic

children.

The third topic is transitioned to

adulthood and adult services. We had two

comments on this topic. Ms. Helen Zhang

wanted to make the IACC aware of mBot, an

educational kit designed to teach computer

207

programming skills to individuals with

autism.

ASAN expressed concern that according to

the 2013 IACC portfolio analysis report, only

about 2 percent of federal autism research

funding went to research on service

effectiveness and access, but only about 1

percent went to research on lifespan issues.

The fourth topic was autism resources

and support. We had two comments on this

topic. Mr. Kellen Smith wanted to make the

IACC aware of an online resource available at

www.tuck.com, which provides sleep management

information for individuals with ASD. Ms.

Jamie Juarez wanted to make the IACC aware of

her book titled Hope for Autism.

And the fifth topic is vaccines in

autism. We had two comments on this topic. An

anonymous commenter believes autism is caused

by mercury in vaccines and expressed

208

frustration that the issue is not being

addressed by the IACC.

Mr. Dwight Zahringer asked the IACC to

investigate how glyphosate maybe affecting

children with ASD versus those without ASD.

He also asked the IACC to request that

congress investigate the CDC whistleblower

issue and to provide a full debrief of the

study on autism and the MMR vaccine.

And the last topic is the IACC strategic

plan for autism spectrum disorder. We had one

comment on this topic and it was from ASAN.

They continue to have concerns about the IACC

strategic plan questions. ASAN believes that

the questions should not suggest that autism

should be cured or prevented. They also asked

that lifespan issues be prioritized in the

plan.

209

That concludes the summary and we thank

everyone again who submitted written

comments.

DR. GORDON: Thank you, Karen. We now

actually have some time to discuss. The

discussion can be about the written comments

or the oral comments. I would encourage you

especially since several of the written

commenters asked that their comments be

discussed. That if you feel like you have

something to add, answer, or contradict the

written comments that you feel free to do so

at this time.

MR. ROBISON: I think I have raised this

issue before, but is there any way that we

could do some kind of roundtable discussion

where we could address some of our

constituents' concerns at greater length than

the few minutes we have for a comment session

in here? I would volunteer to come to

210

Washington for another day if we could

because I just see how important it is to

these people who write into us and come to

us.

DR. GORDON: For that purpose, we have

actually extended the public comment period

for this meeting to an hour and 15 minutes.

That means we actually have about 40 minutes

to discuss any of the topics that you would

like now. I apologize if you were not

prepared to do so, but I feel like we have

the opportunity to do that now if there are

specific items that you have noticed or if

you want to take a few moments to look

through and look at some of them, that would

be wonderful.

MR. ROBISON: One thing I will ask

because it speaks to several of the comments

today is how do my fellow committee members

feel about us making a coherent committee

211

statement about what the tradeoff of

accommodation, acceptance and cure means to

us. For example, I know cures are a very

charged topic. Some people interpret it as

cure is ridding the world of people like me.

I do not think any of you believe that people

like me, Sam, or any other autistic person

should be got rid of, but I understand how

people feel that way.

Some of you have said things to me like

if my autistic child could speak for himself

the way your or Sam could, I could consider

my child cured. I do not consider myself

cured of autism because I am able to advocate

for myself or others here in this forum, but

I understand that feeling in parent's part.

Might we try and develop a statement on

what this means to us and what our objective

is because when I receive letters from people

and they say I cannot believe that IACC is in

212

the hands of you neurodiversity people and I

want my autism cured. I hate my autism. It is

hard for me to really answer that. I do not

oppose the development of any therapy to help

such a person. If you feel like you are in

pain from your autism, if you cannot do

something, I absolutely support developing

therapies to help with that and I think all

of you do. I wonder can we as a group answer

that.

What do some of the others of you think

about that topic?

DR. GORDON: Let your comment sit for a

little bit. I think that people will have

something to say if you give them a moment.

DR. DANIELS: John, this is a topic that

is in the strategic plan and could always be

enhanced or expanded a little bit if the

committee felt it was important to highlight

it in a bigger way. We could take what is in

213

the plan now or in the introduction of the

plan even and try to enhance that so that it

captures some of that.

MR. ROBISON: Would you like me to write

something and send it to you?

DR. GORDON: I would actually like in the

spirit of your challenge to take this up as a

discussion item amongst the committee. I am

wondering if there are other comments or

points of view.

DR. BIANCHI: I will take an attempt at

this. My research is in prenatal treatment of

Down syndrome. This has come up extensively

in the Down syndrome community as we query

the ethics of trying to approach a

neurodevelopmental disorder. Working with

ethicists, I have been very struck by the

fact that prospective parents make a

distinction between an unborn child that has

no personality and a person who has been born

214

and experiences a life and has a personality.

We never use the word cure either. We use the

word treatment or encouraging brain growth

because with Down syndrome, one of the big

problems is there is microcephaly.

Treatment is a complicated issue. That

is all I am saying. There may be different

points getting back to the lifespan where we

are looking at early embryogenesis through

adulthood. There may be certain points of the

lifespan where it may be more appropriate to

think about treatment as opposed to later on.

You have lived a life. You are who you are.

It is very difficult to think about changing

who you are and your personality, which is so

intrinsic to you. I would say that for

anybody in the room. I do not know if I am

being articulate.

But my main point is that there may be

certain points in the lifespan where

215

treatment is more ethically acceptable and

appropriate in the context of helping

individuals function independently in the

world.

MR. ROBISON: Do you see treatment as

cure?

DR. BIANCHI: Not use the word cure.

MS. CRANE: Whenever we talk about

ethicists and about what parents think versus

fetuses versus individuals who have already

been born, I would say that if we do have

this conversation, we need to make sure that

we are not just hearing from parents and

ethicists, but from actual autistic people

and that includes people on the autism

spectrum who are non-speaking people who have

serious communication difficulties, people

with intellectual difficulties. When people

say, John, let's keep John the way he is. We

are just going to go and change these other

216

people. A lot of the time that other group of

people also has opinions on this that can be

ascertained. Those opinions need to be taken

into account.

MR. ROBISON: It is absolutely important

to recognize that for every one of you – for

everyone who says John or Sam does not need a

cure because they can do this, you are going

to find a John and a Sam who say I do not

think that I am free of disability. Here is

what I cannot do.

MS. CRANE: I do not think I am free of

disability. I am pretty disabled actually.

DR. GORDON: You both have indirectly

raised a point that I think – actually all

three that we need to make explicit. In the

normal adult, doctor-patient relationship,

the patient makes the decision about what

treatment he or she will pursue provided the

patient is competent. For most medical

217

decisions, the doctor provides advice. It

might be very strongly worded advice, but

advice nonetheless and the patient retains a

decision-making capacity.

There are ethically more straightforward

situations like the one that, Diana, you

described where an individual like – there

are conditions where the treatment decision

is being made by someone other than who is

getting the treatment where it is clear that

has to be where an individual or patient

cannot make the decisions for them. And

ethicists have made it very clear that other

people should act in the best interest of

that patient and then make the medical

decision for them.

What is tricky about thinking and

talking about cure with autism or prevention

with autism is that it is parents making that

decision potentially very early in life. But

218

I do not think you would get very much

argument with ethicists that parents do not

have the right to make that decision.

MS. CRANE: But that is not really the

question. I actually think Judith would have

– we were just talking about the deaf

community and parallels with the deaf

community. There is a very live debate in the

deaf community about cochlear implants on

infants. And absolutely from a medical ethics

point of view, parents can decide whether or

not to put a cochlear implant into their

child. But when we are talking about what

does the community feel about this, deaf

adults have very strong opinions on whether

or not they would have wanted a cochlear

implant as a child. That is obviously a very

important thing to be taken into account.

That has parallels to what we are seeing

here.

219

DR. MANDELL: We are talking about this

within the context of treatments or cures.

But I wonder if, John, the larger question

you raised is what are the underlying

assumptions that guide both spoken and

unspoken that guide the decisions that we, as

a body, make because our strategic plan is a

set of decisions. This is what we prioritize

and this is what we think should be funded or

the research that should be done.

Understanding those assumptions, some of

which relate to treatment and cure, some of

which relate to other things, is probably

pretty important.

One question is how important is it that

we have consensus on what those assumptions

are versus that we have robust discussion of

what they are. In going through the

statements about the IACC this morning was

our respect for diversity of opinions and

220

diversity of views on many of the issues that

we are talking about now. I would be very

open to discussion of these things and to

make sure that we all know where we stand as

individuals. I am not sure that it is either

incumbent on us or healthy for us to come to

consensus about what all those underlying

assumptions are.

DR. PELPHREY: I think that you

beautifully articulated a very important

point. I can only add to that. The diversity

of opinions is important and then when one

considers what our objective might be, which

is to obtain funding for our community's

interest in order to fund research and

services. That requires putting forward a

concise, clear statement about what we want

funded. That is the only time that we all

need to stand in unison.

221

In the year that I have been in DC, I

have learned in talking with professional

politicians that they love the autism

community largely because they can say they

love children. They are supportive of autism

and autism research and mind you on both

sides of the aisle and would love to do

something to help and then are very familiar

with the different factions and the different

arguments and the different views. They

quickly point those out whenever you begin to

talk about what you would like to see done.

As I have gotten to know some of them

better, they point out very frankly that one

of the reasons your community is so loved is

that you are not presenting a coherent set of

asks. Therefore, lip service is free. There

is plenty of that in town. Until the

community presents that set, which you could

think of the strategic plan being that, we

222

are not going to get anything. If we spend

time trying to build consensus without

keeping that end goal in mind then I fear

that it will be a waste of time, not a waste

of time in terms of existential waste, but

rather in terms of getting that product done

because it sounds like we are in broad

strokes agreement about most things if not

the most important thing for a committee,

which is the general respect for each other's

points of views and wishes and therefore can

develop a set of asks.

I am speaking as a parent of a child

that is fairly heavily affected by her autism

and epilepsy and would be one of those

parents that would say I hope she turns out a

lot like Sam. Then I am also very well aware

of the then what. I can see both sides of it

very clearly.

223

MR. ROBISON: I think that is a good

point. We do not have to maybe all agree with

everything that we want. But when I engage

the people who challenge the idea of

neurodiversity people, you are opposed to

cure and I want a cure. And I say what

specifically would you change about yourself

or what would you change about your child.

Mostly what I hear is I would fix this thing,

this disability. Maybe that is cannot talk.

Maybe it is cognitive functioning or

whatever. Clearly, Sam and me, your child –

we have different challenges because of

autism and each of us would say maybe I would

change this thing or maybe now at my age I

would just live with this thing in me.

But I am not opposed to anyone who says

I want to fix this thing in me. I want to

make myself better. My question then is if we

all agree with that, we should agree with the

224

general statement that I want to develop the

tools with government funding. I think it is

the job of government to provide this kit of

tools and therapies that can assure the best

quality of life for every autistic person.

That means maybe you need to speech help,

maybe you need GI help, maybe you need

cognitive help. I think that is a job of

government to do that research and provide

those things. If you agree, you should join

us in that quest and we should put aside a

fight over semantics. I feel like the fight

over semantics is significantly harmful to us

as a group because we cannot mount a coherent

effort to get what we want.

DR. GORDON: John, actually, I think that

is a wonderful point and that crystallizes

actually what is really in our vision

statement. Our vision statement is the

strategic plan will accelerate and inspire

225

research that will profoundly improve the

health and quality of life of every person on

the autism spectrum across the lifespan. It

is a great step.

I still admire your attempt to bring it

back to this issue, which I think is more

than semantics, but perhaps not consentable.

That is not a word. But I am glad we are

having this discussion. I think it is a

discussion we need to have every now and then

to remind ourselves of the different

perspectives around the table.

DR. AMARAL: John, I think Question 3,

the way it has come out, is that research is

fostered to try and preempt and prevent

disabilities associated with autism broadly

speaking. But we agree that that is the goal

is all I am saying.

I think it is going to be impossible. I

agree with Kevin and the whole tenor of this

226

discussion to say anything more than that. I

do agree with you. Many parents say we want

to cure our child. What they are really

saying is that they want to eliminate the

gastrointestinal problem or they want them to

sleep normally or they do not want to have

profound anxiety. Those are all components of

autism. I think our research agenda is trying

to attack those issues.

For different people, it is going to be

different issues. I think we all agree. I do

not think there is any disagreement. For

different people, for different

personalities, we are going to have to

address different aspects of their concerns.

For you, it is the issues that bother

you. We should be developing a research

agenda that helps people in your situation.

For an individual who does not sleep at

227

night, there is a whole new agenda of trying

to understand sleep disturbances in autism.

I guess I am sympathetic with what you

are saying, but I do not think we disagree. I

think this is what the strategic plan is

trying to get at.

MR. ROBISON: It sounds like we do have

that consensus and maybe we just need to

articulate it in words in our written plan.

DR. GORDON: Actually, I think it is

there. I think it is there in the vision

statement. It is there in Chapter 3.

Nonetheless, I am glad we had this time to

discuss it.

I would like to ask if there are other –

now that we have had perhaps a chance to look

at some of the written comments and consider

the oral comments if there are other topics

that individuals brought up that members of

the committee would like to discuss.

228

MS. CRANE: Can I bring something up?

There is definitely some of conversation

about services in the comments. Because of

the deadline, I do not think commenters had

the opportunity to raise this issue, but I

feel like I have to anyway. Those services

are potentially going to be impacted by

policies that are being debated in the Senate

right now.

We know that almost all of the home and

community-based services for people on the

autism spectrum, all of the supportive

housing services, all of the job services or

nearly all of the job services, quite a lot

of special education services. These are all

funded by Medicaid. We are looking at a

significant cut in Medicaid. If that cut

happens, those services –- and I know many of

the other members of this committee have been

229

speaking out on it. Many of those services

are at risk.

I also wanted to bring up that today is

the 27th anniversary of the passage of the

Americans with Disabilities Act. It is kind

of coincidental that we are meeting on the

exact anniversary. That law has done so much

to move us out from institutions and into the

community and into real jobs and into

integrated employment and education. When

people talk about Olmstead, moving people out

from institutions into the community, that

decision by the Supreme Court was based on

the Americans with Disabilities Act. It is a

very important day for us as a result of

that.

Again, when people do Olmstead work,

when they try and move services from the

institutional settings to the community,

Medicaid is almost always the main funder for

230

those services. I just wanted to remind that

of everyone.

There is a limited amount that I can say

as an IACC member. But I really hope that

people are taking that awareness into the

rest of their professional lives and working

to educate the community on that. Thank you.

(Applause)

DR. AMARAL: I just wanted to comment on

one of the written summaries from Dr. Eileen

Nicole Simon, who has actually been here and

presented. She was actually one of the people

who said why don't we talk more about it. I

feel bad that we do not have enough time to

address some of the issues.

In the particular case of Dr. Simon, she

has for a number of years had a theory about

what brain regions might be most damaged

leading to autism and has actually talked

231

about childhood asphyxia during delivery and

things like that.

I just want to put on the record that I

think that these are all interesting ideas.

She has done a huge amount of research over

tens of years. Our problem is we do not have

the material in terms of postmortem brain

material and other raw material to prove some

of her theories.

I think in this case, it is not so much

that she may be wrong. She is proposing very

interesting, provocative ideas. It is just

that we do not have the wherewithal at this

point in time to actually prove her theories.

I just want to make sure that people know

that we are not paying attention to these

things. In time, perhaps we can come back and

see --

DR. GORDON: Let me actually underscore

your statement. You might want to add

232

something of your own with regard to the need

to continue the development of brain banks so

that we can do these kinds of postmortem

studies. NIMH has a brain bank, which

includes autism. I encourage anyone who is

listening out there to go and visit the NIMH

website and do a quick search for the brain

bank. You can learn about how to donate

brains of course after you die. We do not

take them from you when you are alive. David,

I know that you have an effort that you might

want to also publicize.

DR. AMARAL: I will just say a quick

word. From the Simons Foundation, we have

initiated Autism BrainNet. If anybody is

interested in getting more information, they

can go to TakesBrains.org and actually sign

up for a registry. You will get a quarterly

newsletter. You are making no commitment

whatsoever. We actually had our hundredth

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donation to Autism BrainNet. We thank the

community for considering this obviously very

important donation. But we want to get more

and more involved. We appreciate their

participation.

DR. GORDON: I have just been informed

that our final oral commenter is here.

Margaret Gautier. Why don't you go ahead and

take the podium? You have five minutes for

your comments.

MS. GAUTIER: Hello. How are you doing

today? I am sorry I am late. It was a lot of

fun getting here. That was a lot of circling

and leaving and coming back. Thank you for

being patient with me.

Part of me being here is to share my

perspective as a parent and someone who has a

child in the public school system where part

of the problem that I have noticed, I am not

a scientist or anything, but I have dedicated

234

12 years of my life, he is 12 too, trying to

understand this and educate a mentor and

really advocate for the cause.

Part of the issue that I have

encountered is that we do not have a

functional academic curriculum for autistic

kids. In the public school system, there

really is not a way to identify the levels in

which children are functioning at and we need

to be able to find a way to pull that

information from all the specialists and the

teachers and all of these tests that they

have our kids doing and be able to try to

come up with a way to educate our kids.

My story deals with – my child

essentially lost a year of instructional

learning because his teacher did not know how

to teach him. She did not know how to

progress him academically. And part of the

problem is because the State of Virginia

235

where I live does not have an actual

functional academic curriculum. They have

something called the SOL and then they have

these sub-categories for what they teach that

still goes with the SOL. But the teacher is

also responsible for coming up with their own

curriculum that coincides with the SOL.

Sometimes these teachers do not know really

what to do. They do not have the tools or

templates to really educate our kids and be

able to put them on a path of success. There

was a lot of inconsistency in the public

school system regarding how our kids are

educated.

For some of us where I live in Virginia

unfortunately some resources are not

available because of where we are. We do not

have centers. We do not have a place where

teachers can actually come together and be

able to try to come up with a way of how we

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can actually instruct the kids. It has been

very difficult for not only myself, but I am

sure for other people in trying to ensure

that the services are administered fairly and

properly and that they meet the needs of our

kids. Sometimes you have these teachers that

are just so burnt out that they really do not

have the energy or the drive to stay

dedicated to the cause that they went into to

begin with.

Another thing also is technology. I do

see the benefits of having more technology in

a classroom with kids that have autism. My

son is a technology guy. He is a computer

freak. He can navigate through anything on

the computer that he wants to. That is a

wonderful thing. That is something that I

encourage at home, but it is not always the

same thing at the school system. With the

school system, they give him a tablet and to

237

play with, but there actually is not anything

that they may be learning. I know there are a

lot of tools and a lot of resources out there

for them to use, but unfortunately I do find

that the level of education in the public

school system is very inconsistent.

I should be able to take my kid to one

school on this part of the county and be able

to get the same type of education in another

school in a different part of the county, but

that is not the case. It is really based on

the teacher and their ability to really be

patient, to learn to educate themselves.

There is training and all these things

available, but a lot of it is not mandated.

It is not required.

I think that we really need to – I think

the government needs to help more with trying

to come up with a way to standardize autism

as a service and somehow find a way if there

238

is not something already in the works to make

it a specialty amongst the medical field,

amongst the teachers and the academic field

and within that community so that we can all

try to build upon what we already have, what

we know and help our kids just transition

easily to help them learn and grow in a

different kind of way.

My kid is not really like most autistic

kids are not really big on human interaction.

But the way that he can learn and interact is

through the computer or through technology

because he does not have to figure out other

people's emotions, their body language, what

they are feeling, and the energy that they

are giving off. It is a lot easier for him to

get instruction off the computer.

I have asked my public school system to

– I have heard of Melo. I have read about it.

I heard that it was great and a wonderful

239

thing. I am telling these teachers, why don't

we have this in the classroom. Maybe this can

help facilitate learning for them for some of

the kids that have a hard time dealing with

people and interacting with the teachers or

other students.

Funding is always a problem or they just

do not have interest in it because they do

not know the technology themselves and they

are not willing to learn. I even talked to

the director of special education for my

school district, which is Prince William

County schools. Some people kind of get it,

but a lot of them don't. As someone who is in

a leadership position, I do not feel that

they really fully understand what our kids

need in order for them to really be taught in

a less than conventional way.

That is why I am here to just kind of

spread that out because I have grown to be

240

very frustrated with the fact that my tax

dollars, 42 percent of them, go to funding

the school system, but yet we do not have

enough technology, enough resources, enough

training, enough information available for

these professionals who are supposed to be

certified, degreed, and educated all

throughout whatever specialty that they are

in and my kid is sitting in a classroom and

not be taught anything and then he has

unfortunately regressed as a result of that.

Communication is an issue. Some teachers

do not community very well. We need to have

some more oversight in the public school

system. I do not think that we can really

allow the states to figure it out for

themselves. I think that they need to hear

from a higher authority that this is what we

need to do in order to make sure that we have

a certain level of consistency across the

241

board. If I move to Iowa, my kid probably has

no chance there because there are certain

things that they do not have. We need to try

to standardize things as much as possible,

pull data, pull information and collect it in

one of several places so that we can try to

figure out how are we going to teach these

kids in a public school system. That is

pretty much it. Thank you.

DR. GORDON: Thank you very much. Sorry

for the inconvenience of having it in a

difficult place to get to, but we really

appreciate you coming and giving such clear

and compelling testimony.

Are there comments?

DR. MANDELL: I wish Ms. Gautier had

written the services chapter for the IACC

report because I think she really eloquently

hit on exactly the problems we are trying to

address in that chapter. I just want to

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reiterate some things that I thought were

really important first and that were said by

some other presenters as well.

The complete inadequacy of preservice

training. What we want is to make teachers

who are expert in working with kids with

autism and what we have is a model in which

they are allowed to dip their toe in the

water before they are thrown into the pool to

work with these kids, leading to tremendous

amount of burnout, which we found the

turnover rate in the Philadelphia School

District among special education teachers

working with kids with autism is 25 percent a

year. They have no in-service consultation or

support. Even as they find problems, they are

not able to implement what they want to

implement or the field changes. We do not

have a good way other than to as we like to

call it, train and pray. We send them for a

243

one-day workshop on something that we want

them to be expert in and we send them back to

the classroom.

There is a panoply of programs that we,

as a community, have not said these are the

fundamentals that should be in every

classroom. As a result, we have warehouses

filled with curricula and programs that

somebody thought were a good idea last year

because they got a flier about it or went to

a training that are no longer being used. We

have wasted a tremendous amount of money.

This is particularly true in districts that

are under resourced primarily because

education funding is tied to property taxes

because Congress has never fully appropriate

all the funds for special education that they

said they would probably about 17 to 19

percent. That this is driving a lot of the

disparities that we say we want to address in

244

our strategic plan and we should keep in mind

that when we are talking about race, we are

often talking about place when it comes to

these kinds of disparities.

I would love to make sure that

everything about that that has been said

today is really foremost in our mind as we

think about what the research agenda should

be and what the practice agenda should be. We

already know a lot of things we should be

doing and we are not doing them. We could do

all the research we want, but if it does not

make it into practice and if we have not

developed a policy system and a service

system that allows that to happen then the

research is not good for anything.

DR. GORDON: Thank you, David. Are there

other comments about the oral commenter or

any of the other commenters or the written

comments? Thank you very much and thanks to

245

all the commenters, oral and written, for

those of you here and for those of you who

are listening in. We really appreciate it. We

apologize that we do not get to discuss every

single one, but we do look at them and we do

– I, myself, have marked several of these

that I want to follow up on in terms of

trying to figure out whether we should

include them in the NIMH agenda. I assure you

that even if we did not get the chance to

discuss them individually today, we do

consider them important.

We will go ahead and move on to the next

item on our agenda, which is the discussion

of autism after 21. To lead us off in that,

we are going to have a presentation by the

Madison House Autism Foundation. I welcome

JaLynn Prince, Adrienne McBride, and Desiree

Kameka, who are going to have a presentation.

Afterwards, we will have time to discuss.

246

MS. PRINCE: Thank you very much for the

invitation to be here. We are grateful to the

fine leadership that we have been seeing with

IACC. I am very impressed with a number of

people that I have had the opportunity to get

to know that are sitting around this table.

We wanted to tell you a little bit about

what we have been doing for the last several

years. We started Madison House officially

ten years ago though we started research 13

years ago. My husband was a research

scientist and I had a background in many

different things, in PR in science in

broadcasting and in the arts. We decided that

we wanted to move forward to do something in

the field of autism. As we moved forward, we

did a marketing survey. As we did our

research both locally, statewide, and

nationally, we saw that there was a great

need in the adult arena. In fact, the space

247

was wide open for good or for ill. We want to

talk to you a little bit about what we have

been doing over the last while.

Let me tell you a brief story about why

we are in this. This illustrates something.

We were on our way to a family event. We had

a nose count of how many people were going to

be there, how many adults and how many

children. My husband did not realize that we

had the nose count and as we were in our van

as many people do going on to a family

function, he was saying do we have the right

count. Do we have Madison? I turned to him

and I said Madison does not count, thinking

that he had already been accounted for. A

moment later we heard a little voice in the

back seat saying one, two, three, four, five.

Madison counts. Yes, Madison counted at the

age of 11 as he made that statement. He is

now 27 years of age and he still counts.

248

He has been termed often as the tidal

wave or the tsunami of autism. He has been

able to benefit from a number of things, but

we are seeing that in the adult arena, there

are few things that exist to help Madison and

the many other Madison's around the country.

Madison House Autism Foundation is not a

government-funded organization. It is not

part of a university. We are not providers

although we work with each one of these

entities.

We started the foundation, but now it is

time for this foundation and the work that it

is doing to be taken over by the rest of the

country to do very important things in every

community in this nation.

One of the things that we had toyed with

in the very beginning was to have a

roundtable and I bring this up because you

were talking about something of a similar

249

nature. One of our original goals had been to

have the financing to pull together voices

from around the country both in government,

the private industry, and universities to put

out a plan for autism and especially for the

portion of autism that takes up as someone

wisely said three-fourths of one's life.

Let me give you an idea of what Madison

House has been doing. We have a few videos

here for you. Let's start with this.

(Video Shown)

MS. PRINCE: That describes in a nutshell

the things that we are working on.

Part of those statistics -- in that

particular video. In the darker portion

there, I want you to look at the last line.

There was something that my husband found in

his research in looking at some work that had

been done at UC Davis Medical School in

California. Look at that number on that. Each

250

year by the cost for direct services,

indirect services, and the lack of

productivity it costs our nation $300

billion. That is a staggering sum. They

estimate that by 2025 that that will almost

double. Can we afford not to do things? We

are hoping that organizations like ours and

other not for profits and the government and

private industry can come together to examine

what we can do to reduce that cost to our

country.

This is a type of funding that we have

right now. This happens to be information

from IACC. We see that there is 2 percent of

the research dollars that go toward adults.

Again, remember that three-quarters of one's

life is spent in adulthood. I think those

statistics are a bit problematic.

We have come a long way with societal

expectations, focusing on person-centered

251

planning and moving away from

institutionalizing individuals or

institutional programs for individuals, but

to make certain people can be involved in

community.

Madison House identified areas that you

saw on that video. We have seen that there is

– and we have had these four things. There

are so many things that we could be working

on. These are our four core things. The lack

of appropriate and affordable housing so

people have various options and that they can

have the supports in communities that they

desire.

We see that there is excessive

unemployment. It is estimated by Drexel

around 80 percent un- or under employment.

We have also seen too that we have

needed more university programs, more

vocational programs. One of the things that

252

we started very early on was a conversation

with a university that had had the challenge

to grow. In April, we were fortunate enough

to have the ribbon cutting for a new place of

learning that can help those navigate college

that are college bound so they can have a

successful experience and move on hopefully

for employment. Many of these things are

plans that need to be into play many years

before they are realized.

We have also seen that there is a lack

of medical care. I am not saying necessarily

treating autism itself, not necessarily the

gut issues or different types of things.

Those are all important. But we have very few

physicians that are trained to work with

individuals on the spectrum for typical

medical situations.

There are ways – we have had a member of

our board who put together a wonderful video

253

about how you can have effective encounters

with physicians and that individuals on the

spectrum and others and feel comfortable in

going back to physicians. Is that going to

eliminate some of the costs that we have in

society if we had people that are healthy and

that we have appropriate medical care?

This is something that still absolutely

astounds us. Many of us have heard this

phrase before. Autistic children grow up to

become autistic adults. There is not a week

that goes past that I do not encounter

someone that is a very well-informed

individual of the community that says I had

never given it any thought. I had no idea

there were autistic adults. I have heard a

lot about children being helped, but what

about adults? It is astounding to me the lack

of awareness. I hate to use that term.

Because the thing that we are very interested

254

in is bringing a consciousness about having

these individuals in our community. But how

in the world can we create solutions if

people have no idea that there is a need or

that there is people that exist that need

help?

We have selected the word consciousness

because we have felt that we have needed in

some ways to step backwards a little bit

because we have been proceeding with our

work. But when we find that corporations and

individuals do not know that we have adults

on the spectrum, how can we expect their

participation? Something that I will be

explaining in a moment will seem like it is a

very simplistic approach on something, but I

hope it will be a key to something very

important.

We have come up with called Autism After

21 Day. We are going into our third year with

255

this. We want to challenge the nation that

during the month of April on the 21st, this

signifies the time when most services and for

most adults, sometimes it does at age 18 in

some states and in some situations that we

can bring to the consciousness of communities

around the country an understanding that we

have individuals that can contribute to our

nation, to our communities. We try to

emphasize the talents, abilities, and yes,

the challenges because they all go together.

Autism After 21 Day has been a very

interesting thing to be working with. We have

had something that we have felt has been very

successful. I want to give you just an

overview of one of them. There have been

other states that have been doing this.

We are challenging people in each state

to go to their legislators to have Autism

After 21 Day declared. That sounds like a

256

simple thing and maybe a rather fluffy thing

to do, but au contraire. If we can step into

the halls of government on a nonpartisan

basis and challenge people to come together

to make a declaration of yes, we want to help

adults that are on the autism spectrum, what

does that mean during the rest of the year if

we do have issues and we do need to go to our

legislators that we need to go to people

within our counties or people within our

cities to have solutions whether it be

educational, whether it be any one of a

number of things. That is the first step.

This is a picture of us when we were

with the county council here in Montgomery

County just prior to doing an event. This was

a breakfast that we had for 200 business

leaders and individuals and parents. We

brought together our congressmen, our county

council leaders, business people, and

257

parents. We had the Secretary of Labor there.

We had Dick Marriott speaking. We had David

Trone, who is a business leader, who employs

individuals on the spectrum. We had people

from the media. It was amazing to see the

response and to get the feedback going in and

coming out of that breakfast.

We had a lot of very interesting things

that have come about as a result of that. We

know it can work in communities across the

country, again, to increase the

consciousness.

We also had a young man playing the

piano there who was on the spectrum. He also

works for a piano company. We had 21 works of

art done by people from around the country.

Not only did they represent themselves and

their art work, but they represented many

others because it was a visual connect of the

258

abilities of many individuals on the

spectrum.

There is something that we have included

with this that we had made available to

various states. These things are made

available to you right now. These are mini

documentaries about individuals that are on

the spectrum. I would like to play one right

now.

This is David, who is a cartoonist. Very

interesting young fellow.

(Video Shown)

MS. PRINCE: We have one other video that

I would like to show you. I think there is a

lot of impact with that. May I remind you too

that well over a million families have

individuals with IDD and autism living with

caregivers over the age of 60? Let's go on to

our next one.

259

This next individual is someone who is

working on a farm that has been partially

gifted to our foundation here in the Maryland

countryside. We are offering job training for

individuals on the spectrum in agricultural

endeavors. This is Adam AJ Jones.

(Video Shown)

MS. PRINCE: I would like someone to

stand for just a moment and as a young man in

this last movie right here. Adam. Thank you

for sharing your story with us.

These are the types of stories that we

have talking about and sharing across the

country with Autism After 21 Day. To make

people real, to tell honest stories, to have

voices of families and individuals and those

in the community.

With this one particular part of our

presentation, we would like to call on

everyone to have something of this nature in

260

your own state and location that we can help

provide various aspects of media for it and

to have a breakfast on April 21 to start to

make more people conscious of the talents and

abilities and challenges facing our

population.

This is one gentleman from another one

of our videos. I want to break the conception

that people with autism are unable to do

things. They are just as able to do things in

their lives as anyone else.

I would now like to turn the time over

to Desiree Kameka, who is our national

housing coordinator for Madison.

MS. KAMEKA: Thank you for having us. I

have been working for the Madison House

Autism Foundation since 2009 and made three

housing initiatives. The first one is the

Autism Housing Platform. It is an online

platform where people can bring together the

261

greatest ideas in housing. I have fliers up

here if you would like to take some.

The second program that we run is the

Coalition for Community Choice. It is a

network of organizations and individuals who

are speaking as one voice to be able to

increase options and decrease barriers to

housing and employment choices.

The third thing that we do is empower

local communities by providing consultations

and presentations to help inform local

communities of all of their options.

Today, I am going to speak about

specifically the Autism Housing Network. It

is a culmination of many years of research.

Our foundation has invested over a half of

million dollars into going and doing site

visits. I personally have been to over 100

residential opportunities and social

262

enterprises all around the country and

abroad.

It is a direct outgrowth of the 2009

Opening Doors Study, an initiative by Arizona

State University and Southwest Autism

Resource and Research Center. One of the

things that they have called for was to have

an interactive database and that is exactly

what we have developed with the Autism

Housing Network.

We are also growing this database in a

housing directory of not just existing

opportunities, but also emerging

opportunities and opportunities that are in

the planning stages in order to help people

connect. We host forums and do a lot of

consultations to be able to help people. I am

just quickly going to walk you through the

Autism Housing Network with hopes that it

also brings up some potential questions that

263

can inform research. We really need a lot of

information, evidence-based information for

housing because we believe that housing is

the hub of the wheel. We can put so much

effort into employment and developing natural

supports and creating social networks. But if

someone loses their housing and they are

having to move two counties away, all of that

energy, effort, and resources have just been

lost.

Individuals lose their housing because

maybe their group home provider goes out of

business, maybe their rent has increased out

of their price range, maybe their family

member has died, maybe they live in an adult

foster care situation and their host home can

no longer support them. These are all reasons

why people might lose their housing and

therefore lose all of that support network

that we have worked so hard to build. We

264

really believe that housing is the hub of the

wheel.

This is a shot of our front page. There

is also a welcome video on our home page,

which will allow you to watch the different

functionings of the Autism Housing Network as

well.

This is our education page. We help

people and give recommendations on how they

can explore housing options, create housing

opportunities and advocate for housing. We

developed information on public funding 101.

Here are the basic aspects of where you can

get some support, a turning 18 checklist. We

have a section that talks about statistics

and where you can share statistics about

autism in adulthood.

And then we have also developed a

virtual tour of housing. This is a video

series that is available for free for

265

individuals. And what we have found is that a

lot of families just think that group homes

are the only option. They do not realize that

there are actually many more options

available to them. This video series talks

people through the traditional housing and

support models, some of the challenges that

are being faced with the traditional models

and also what are some of the emerging models

that not-for-profits and other organizations

and family members are coming together to be

able to develop, using the tools that we have

today.

I think it is really important that we

realize that there is no one stop shop that

there are benefits and considerations to the

multitude of housing models and service

delivery systems.

This is a screenshot of our Autism

Housing Network, the housing director. This

266

housing directory can be viewed in the map

view, but it can also be viewed in the list

view. We have created a set of filters based

on our research to help people identify what

could be some best practice models. They are

filtered by property type, support model,

payment options, lifestyles, support levels,

and then the primary residence.

Some questions that come to mind. Right

now, it is now being filtered for live, work,

play communities and planned communities with

built-in support services. A lot of

individuals on the spectrum may never qualify

for Medicaid waivers. They will not qualify

for Medicaid long-term support services that

they need to have some additional support to

be able to live independently.

I was just last week in Florida,

visiting a community called the Arc Village

of Jacksonville. There are a lot of

267

individuals that live there. They pay 30

percent of their SSI and they have built-in

supports like a community navigator. They

have built-in transportation. They have

voluntary planned activities where they do

not have to try to call friends up to

coordinate or figure out rides. It is all

done. They just have to decide if they want

to go or not. They have a dining option. They

have full kitchens with one bedroom or two-

bedroom apartments. They have full kitchens.

But at the same time they are able to access

a dining experience similar to like a college

dorm. As well, they have a partnership with a

local college so that there is nursing staff

there all the time. That is so great too

because these are nursing students who are

finally getting some face-to-face time with

individuals who have autism and other

developmental disabilities.

268

I think that looking at – when we talk

about like this morning of suicide rates, if

an individual has no choice, but to live with

their family, they do not have a job, they

are not accessing their community, they are

isolated, and how does that influence suicide

rates? What if we were to start to look at

the suicide rates of individuals who have

been able to access residential supports in

different types of settings whether that be

host homes, group homes, living independently

in their own apartment or townhouse, living

in a home that their family has bought for

them? How are the suicide rates influenced

when someone is able to live out on their

own?

Additionally, I think something very

interesting is the payment options. A lot of

people do not realize that there are private

paid communities across the country where for

269

families who are wealthy are able to private

pay for their long-term support services for

the lifespan of their loved one. They operate

typically between $3000 and $5000 a month.

But when compared to publicly funding

options, oftentimes it is less than the

publicly funded options in the area.

I wonder because it is private pay, is

there a difference in the quality of life of

the individuals, their satisfaction with

their supports? Is there a difference in the

quality of the staff? Is there a difference

in abuse rates? Is there a difference in the

fiscal responsibility of private pay models

in comparison to publicly-funded options? It

is worth looking into.

Additionally, I think that looking at

property types as well and then lifestyles.

There are different lifestyles for different

people who are on the autism spectrum are

270

just as diverse as the neurotypical

population in terms of lifestyles.

I was in Ohio just a few weeks ago

visiting a community called Safe Haven Farms.

It is established by a father who had tried

to create an opportunity for his daughter who

has high support needs, self-injurious

behavior, and elopement struggles. She had

lived in a group home. It did not work. She

had lived in her own apartment. It did not

work. They had created a suite in their

basement of their house. It was her own

space. It did not work. She was isolated. She

was frustrated. She was having behaviors

daily.

Finally, they developed a farmstead. It

is four homes in a rural community and it is

staffed by a provider of their choice, which

means that the provider is no longer working

for them. They can kick that provider out and

271

have another provider come in. But it has

significantly increased her quality of life.

Where she is having bad day she could walk

around an area that is comfortable to her

where people just expect to be able to

support her in certain ways where she can do

things that she likes to do. And if she has

to walk around in her PJs because we cannot

get changed at that particular moment, it is

okay. This does not have to be a real

community like a farmstead. But I think other

campus-based models needs to be looked at and

we have to be able to have options for this

particular part of the spectrum who

oftentimes are unnecessarily

institutionalized and medically restrained.

We also have the opportunity for people

to be able to submit listings. The

opportunities that are on the Autism Housing

Network have been submitted by people all

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around the country. Please, if you know of an

opportunity that you would like to suggest,

feel free to recommend it.

We also have a resource directory that

you can also submit listings in. Again, it

also has a very specific filter opportunity.

These objectives include being able to access

public support opportunities and resources

for developing a home ownership model.

Opportunities for managing support services

are in this objective field.

In the topics field, this is just an

example. We have 21 resources that talk about

sensory friendly design and architecture. I

believe there are almost 300 resources in the

Autism Housing Network right now, but anybody

can add to these things.

We also have things like tools for life

skills, survey and assessment tools. An area

of research that is definitely needed is

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right here. Assistive and smart home

technology. How can we use this technology?

How much money is saved using technology to

be able to increase direct support staffing?

As well, how is that improving quality of

life because someone does not have to have a

person inside their apartment? They can have

access to on-demand support. How does it

change self-direction of an individual to not

have someone butting in or interrupting them

when they are trying to figure out how to

solve a problem? What does it do to abuse

rates to have cameras in common areas and to

use technology? Right now, the abuse rate of

this population is almost 70 percent. That is

unbelievable, completely unacceptable.

Another area that I think will be really

helpful is right here. Survey and assessment

tools. To be able to start tracking what

happens to an individual's quality of life as

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well as their ADLs, their activities of daily

living when they move out of their family's

house. Why do we assume that the neuro-

diverse population does not grow like a

neurotypical person when they leave their

family home? How much are individuals

regressing if they are staying in their

family home? Why is government forcing

families to keep people in their family home

instead of giving them the supports to move

out into the community? In the long run, are

we saving money by keeping them in their

family and making them more and more

dependent or would it be a better investment

if we were to invest in the individual, give

them the supports in the housing that they

need so that they can continue to grow in

their independent living skills?

We have a discussion forum. We have an

area that talks about stories. A lot of the

275

site visits that I have done – I do

interviews with residents where I videotape

their responses to questions like what do you

like best about where you live and what would

you change.

We offer consultations to individuals

who are having challenges. We offer

consultations to emerging projects. Something

that is really important to keep in mind and

that haunts me is that a million people who

live with a caregiver over the age of 60.

Every two weeks I get a consult request where

a family member be it a sibling or an uncle

or a nice or a nephew says my aunt just died.

I do not know what to do with my cousin. Help

me. What do I do? These are people who have

not had any experience in the system,

navigating this maze, and all of a sudden

they do not know what to do.

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Our next steps are going to be

developing a market study with the same

leaders who developed that opening door study

that the autism network grew out of them. We

are combining forces to be with the First

Place Arizona Global Leadership Institute to

do an actual market survey where we can talk

about what are the support models out there.

There has been a huge evolution in the way in

which people are supported and where they

live. There is an emerging niche market that

needs to be defined. We are creating a study

in order to create that foundational

nomenclature so that we can actually talk to

the private sector about how do exponentially

increase options. What are some of the

incentives in policy that can be put into

place so that we can create more supportive

housing opportunities, more home ownership

models? And then trying to develop the

277

relationships between major entities like a

housing and finance authority and Medicaid

for them to be able to think more creatively

about how are we using our extremely limited

dollars.

If you would like to know more about the

Autism Housing Network or the market study

that we are embarking on, please feel free to

come up and speak to one of us. We would be

happy to talk to you about it.

(Applause)

MS. PRINCE: Desiree is a rock star. She

has been received so well across the country.

There have been numerous projects that she

has helped begin across the country and

changing lives in communities.

We are a national organization. We are

also acting locally because we believe that

most of these solutions will be developed by

people within their own communities that are

278

informed and that they know what is

happening.

To let you know that we do have

something else happening with Madison Fields,

there was a very interesting attorney that

just before he died put us in his will. We

inherited the equity in a farm, a 400-acre

farm in Dickerson, Maryland. This is to go

along with the research because we want to

encourage research dollars coming forward to

help this population.

We want to provide a place as we are

doing job training. We are in the

agricultural reserve. We have to confine

things to education and employment that we

can train people on our farm to go to other

farms and work in other parts of the

community. But they can have the support and

learning what they need to learn by being

with others.

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The thing that is so unique about this

is we are bringing three populations

together. First, the neurotypical population.

They are participating on our farm. We have

former military, some with PTSD. We have some

folks from Walter Reed that come out and work

with us. They are finding new meaning in life

especially when there have been situations

where there is survivor guilt. Why am I still

here and my buddies are gone? They find that

they can work alongside other individuals and

have a new meaning in their lives and our

individuals are enhanced by their life

experience. And then we have those with

autism and intellectual disabilities. We want

to partner with universities and others doing

research because we will have a critical mass

there and we want more research being done.

In another 10, 20 years, there will be a

lot more information because when we started,

280

there was very little. We could hardly find

out the numbers in Maryland of how many

people needed to have services or what

waiting lists were even like. We have come a

long way, but we have a long way to go.

We have our call for action with our

Autism After 21. Look at some of the things

that we are doing and we are working with

housing. Those are our three take-a-ways

today. The idea is not limiting the seats at

the table. Everyone needs a seat at the

table, and how do we do that? We get a bigger

table. That was one of the statements that

came out of our Autism After 21 breakfast

this year. I would like you to take that with

you as you are making decisions here with

this auspicious group as we go out into the

community and those that are listening to us.

Let's empower one another. Let's make certain

that we are aware of this very important part

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of the population and that we can do

something positive and that we can work in

partnership to enhance the abilities,

talents, and understand the challenges of

adults with autism. Thank you.

(Applause)

DR. DANIELS: Thank you, JaLynn, and to

all of the Madison House team for your

wonderful presentation.

We have a few minutes for questions. We

can take questions until 3:10. If you would

like to discuss the presentation, please go

ahead.

MS. CRANE: I am really surprised that

the presentation mentioned that autistic

adults are an invisible population and that

we have not been addressed until now since

the Autistic Self Advocacy Network has

existed and has been talking about autistic

adults for ten years. There is no one really

282

better to talk about the needs of autistic

adults than autistic adults.

I think that there are a lot of things

that Madison House and ASAN have in common

and what we want for autistic adults.

Obviously, we all want community

participation. We all want integration. We

all want people to not be trapped in their

parent's houses for their entire adulthood.

But I am really concerned that when we

talk about autism and housing, we are just

investigating intentional communities here

and that is really not what the – that is one

choice, but it is not the only choice and it

is certainly not the only choice that allows

people to move out of their parent's homes.

A lot of people on the autism spectrum

who want to live with friends, their solution

is they go up to their friend or they have

their parents help them go up to their friend

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and say let's find an apartment, a three-

bedroom apartment. It is you, me, and Joe. We

are all going to be living in this three-

bedroom apartment. Unfortunately, there is so

much less money going into research into how

to make that work even though it is what the

vast majority of autistic adults who want to

move out of their parent's homes are doing. I

want to make sure that when we do invest in

research on housing projects, we are not just

researching one kind of housing project that

has a name and a fence around it, but also

the full range here.

MS. KAMEKA: Thank you for your comments.

I apologize if it came off as if we only

support intentional communities. We certainly

do not. I think that one size does not fit

all and that research money should absolutely

be going to the broad range of housing and

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service delivery models because we have a

broad range of individuals on the spectrum.

DR. MANDELL: As far as I know, there are

very few networks of housing opportunities

for adults with autism. We have a real

paucity of research about the outcomes of

different models of housing. Part of the

challenge of doing that kind of research is

that often looking at the outcomes of a

particular setting is hopelessly confounded

by the needs and the presentation of the

people who live in that particular setting.

I wonder if you think there is enough

variability in the different types of setting

that are part of your network that might lend

itself to some kind of research network that

would allow us to look at different kinds of

outcomes for people of autism in different

settings.

285

MS. KAMEKA: I think that part of our

market survey is trying to define those types

of opportunities where we can actually define

the service delivery model in general and

then define the housing property type and

then also define the population based on

their support needs so that there can be

research done with either one sub-population

and one type or to look at the variability.

In any way that you can inform how we are

developing this market survey, I certainly

would like to talk with you further if that

would be something that you would be

interested in helping us make sure that we

are creating those parameters in a way in

which you could do your research.

MS. CRANE: Can I just add? I personally

live with another autistic person. We have a

shared housing model. If the network that we

are looking at is just projects that have

286

signed up to be part of the Autism Housing

Network, households like mine are not going

to be on it and are not going to be included

in market research. That is going to

contribute towards a bias towards planned,

intentional communities as opposed to what I

would call a spontaneous intentional

community, which a bunch of people just say

let's live together and then they live

together and they do not have a name. I want

to know how we are going to make sure the

full range is included in that study.

MS. KAMEKA: You do not have to sign up

for the Autism Housing Network. I think that

looking at the providers of individuals who

have supports. Consumer-controlled housing

and provider-controlled housing are two

different types of service delivery models.

Provider controlled housing is one service

and home are tied together. Consumer

287

controlled is when an individual secures

their housing separate from the service

delivery model. I think that when we are

looking at the quality of life of

individuals, we are probably be having to

look at the service providers and therefore

the service providers will likely be serving

people in a variety of different housing

opportunities. I think that that would be one

way that we can ensure that housing

arrangements like yours, Sam, would be

accounted for.

DR. MANDELL: I would love the idea of

combining. Part of our challenge is we are

always going out and looking for adults with

autism to do the kind of work that John was

referring to earlier. And that introduces its

own kind of bias when you want to study

housing. But I think combining some kind of

network with some kind of survey of adults

288

with autism who are living in settings that

are not captured in this kind of network

could be a very powerful tool to understand

and answer some of these questions.

MS. CRANE: I did not mean be negative

about the housing network. I am just saying

that most people if they choose to live

together in a group of three people, they are

not going to go ahead and register their

house on an Internet database necessarily.

They are just living their lives.

DR. AMARAL: Coming from completely out

of this whole area as a biologist listening

to this, I find it really fascinating. One of

the advantages of having a network is that if

you are going to do this experimentally, what

you would say is we have these several

housing models. Let's take a group of

individuals with autism across this

variability, as David was saying, and you

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place them in each of those models, study

them for 20 years, and then find out what

model works best.

MS. KAMEKA: We do not have 20 years.

DR. AMARAL: I am just being facetious.

Having a network where you can try to get a

semblance of that I think makes a huge amount

of sense.

Beyond that, if you get some data from

that network, it is like a lot of the

biological studies. We are not encompassing

all subjects that have a particular trait.

But if we get information about that trait

then we can apply it to the broader autism

community. In a sense, you do not have to

feel left out because you just want to take

advantage of something that is established in

order to try and get some work done if they

need to go on to the next step and try to

replicate it.

290

MS. CRANE: My main point is that certain

models are systematically never going to be

on this network. That is a concern.

DR. AMARAL: My struggle with this

discussion is that you have to pick your

battles. I think part of the reason why the

percentage of funding going to this kind of

research is perhaps so small is because the

battles are really difficult and complicated.

I think you have to start with doable

research and then you expand beyond there.

Even animal models. There is probably

hundreds of animal models now that have been

implicated or that have associated with

autism, but really what you want to do is

focus on a few of that is going to have the

biggest pay offs. I think in this case, you

want to come up with a system that may have

the biggest pay off.

291

MS. CRANE: I disagree. I do not think we

have any indication that on a broad policy-

wide level four people deciding to live

together is going to have somehow a less big

payoff than four people deciding to live

together and calling it an intentional

community and putting it on this website. And

certain kinds of arrangements are

systematically not going to be on the

website. They are actually among the most

common arrangements and they are going to be

left out. There are serious policy

implications to this. It is not like we will

study this first and then we will study these

other things. There are very serious policy

implications if we are studying certain kinds

of housing and not other kinds of housing

that I think we have to think about.

DR. DANIELS: Other comments on this

topic?

292

DR. TAYLOR: I was just going to say – I

think that these highly complicated issues

that those of us that live in the space on a

regular basis grapple with all the time. I

think as we talk about it, sometimes it

almost feels like – I almost sometimes feel

like I want to throw my hands up and say this

is so complicated. We should just move

forward and do it. I just want to encourage

everybody to keep grappling with these

issues. Maybe some designs are not the best

designs and a study is not a perfect study,

but right now we know almost nothing about

the effects of housing or the effects of

employment or the effects of almost anything

when it comes to adult research. Sometimes I

think we have to start small and move

forward. Any progress is huge progress I

would say at this point because we just know

so little.

293

MS. CRANE: The danger is that if one of

the biggest sources of housing for autistic

adults, which is trying to live with friends,

which is a very large group of people who try

to do this – if they are invisible then

people are going to be diverted away from

those models and into other models that we do

not know are better. I do not know if I would

even necessarily consider that progress if

that is what ends up happening and that is

what we are really worried about.

MS. KAMEKA: I am not sure when you are

saying most people because I will give you an

example. I am a host home provider. A young

man with autism lives with me. We invited him

to live in our house when he had become

homeless. We had known for other reasons. He

does not have the capacity to connect with

other individuals and be able to pay rent. He

lived before we got him a job off of his

294

social security so $721 a month. For him, he

is lucky enough to be able to access

services. I think when looking at research

purposes, there are certainly two very large

differing cohorts, which are individuals who

cannot access Medicaid waiver services and

then individuals who can access Medicaid

waiver services, individuals who can afford

housing because they have more than a 20-hour

per week job and maybe those who will live

off of SSI or SSDI or a little bit more if

they are able to access employment, which we

know most individuals on the autism spectrum

are not accessing employment right now.

I do think that we can try to tease some

of the population apart in order to focus on

a set of individuals who are not accessing

Medicaid services who have a job who are

having trouble getting affordable, accessible

housing or not. From what I hear, it is a big

295

problem being able to afford and find housing

and roommates that work. And then you have a

whole other population of individuals who do

not have the capacity to be able to do that

who do rely on Medicaid waiver supports and

will need to find intentionally affordable

housing, not just a housing voucher. A

housing voucher – when they say there are

housing vouchers for people with

disabilities, there is not even waiting lists

opened in many places in our country. It is

not really an affordable housing solution in

any way, shape, or form.

DR. MANDELL: I think Sam’s point from a

statistical perspective if that you

artificially constrain variance around the

housing options that you study, you can only

find the relative benefit within the

relatively narrow range to which you

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constrain. That is how you end up with

Charles Murray's bell curve.

I think that we want to be really

careful given the policy implications of what

we are doing to make sure that that whole

range is represented to the greatest extent

possible.

Now, in order for that to work though,

there has to be enough overlap in the

presentation of the individuals living in

those different settings for you to be able

to draw meaningful conclusions. You have both

sets of constraints that you have to be very

sensitive to. But I definitely hear what you

are saying about the need for the range of

housing options to be represented if you want

to draw meaningful implications or inferences

from what you study.

MS. CRANE: The point that Desiree made

about Section 8 vouchers not being available

297

is another way in which this intersects very

intimately with policy advocacy. If we do

research on people who are living on SSI,

using a Section 8 voucher to live with

whoever they want and they are getting self-

directed services, yes, there are a lot of

people who cannot access that. But if we have

data on the outcomes of housing models like

that, we can use that to inform policymakers

on whether or not these Section 8 vouchers

should be made more available and we cannot

do that without the data.

MS. MCBRIDE: This discussion what you

are saying of how important that the market

study that we are proposing to do will build

on this body of research to help answer these

questions and get the data that we need to

answer these questions. If anybody is

interested in partnering with the housing

study, please see me afterwards so we can

298

discuss how to move forward and make sure

that we do a really excellent study.

MS. PRINCE: Adrienne is an absolutely

amazing executive director. I thank her for

all the coordination that she does and

bringing us here today.

I wanted to remind you of one other

thing. During the time that we have been

speaking, another four and a half individuals

in America have joined the ranks of adults on

the autism spectrum. Thank you.

(Applause)

DR. DANIELS: I would like to now move us

into our break and for us to be back here at

3:30 to start up again. Thanks.

(Whereupon, the Committee members took a

brief break, starting at 3:17 p.m. and

reconvened at 3:30 p.m.)

DR. DANIELS: Let’s get started on

committee business. We want to come back to

299

this to try to finish the work we were doing

on the strategic plan.

We will resume where we left off. We had

just finished our discussion of Question 2. I

would like to move to Question 3 on risk

factors. What causes ASD, and can disabling

aspects of ASD be prevented or preempted is

the new title for this chapter. You have

three objectives that are listed here for

you. Does anyone have any comments on

Question 3 and the content? Anything that you

thought needs to be expanded or if there was

some other topic that was omitted.

MR. ROBISON: I would just say the same

thing that I think we need to get this done,

Susan. We will have plenty of opportunity to

make all the changes we want to the 2017 plan

in four more months.

DR. DANIELS: We are going to be doing an

update in 2018. That sounds far away, but it

300

is really not that far away. This is the

2016-2017 plan and we want to make sure it

gets done in 2017 so we do not have to expand

that number. We want to finish this plan this

calendar year. I think it is completely

doable. You all have come very far with this.

I think it is just a few more steps.

Any substantive comments on Question 3,

things that you think need to be added.

DR. KOROSHETZ: A point of clarification.

They talk about recent survey of autism twin

studies find concordance for monozygotics at

about 45 percent. I had thought it was

higher.

DR. DANIELS: David, do you want to

address that?

DR. AMARAL: That is a review paper that

came out last year that actually was a meta-

analysis of all other – in studies and that

is where it landed at around 45 percent.

301

There is quite significant variation within

different studies from this meta-analysis. It

was Bourgeron who is the first author of that

review.

DR. DANIELS: I know that there are a few

papers that have come out in the mean time

since this was written. Those are things that

in the comment period, as you all review it

and send comments, if you want to add a few

sentences here and there or references, you

can let us know.

DR. REICHARDT: I would just like to say

that I wish – there have been a few sentences

added at the end of this section on genetics

– I was not very happy --

DR. DANIELS: You mentioned something

about the evolution of the X and Y

chromosome, but that was something that we

were not able in the office to be able to

write about so if we needed a reference or

302

something to go with – if you could give us

more clarification, I think we could add a

few sentences. Evolution of X and Y

chromosome.

Anything else topic-wise that needs to

be in there?

DR. REICHARDT: (inaudible) -- what is

known about evolution – illustrates several –

importance of discovering – risk factors –

understanding – it has such financial

implications --

DR. DANIELS: If you could send us some

information and then if we need

clarification, we will call you.

Anyone else have comments on this

section? We did make the revisions based on

the comments at the April meeting to try to

capture more broadly the interest in

preventing disability, but also ensuring that

research is supported for prevention in terms

303

of environmental factors that may affect

early in the process.

MS. CRANE: I mentioned this earlier

today with respect to the prenatal language.

I think that the language on genetic

counseling is probably going to be

interpreted by a lot of people in the

community as an attempt to say you have an

autism gene so do not reproduce or let's

screen fetuses for autism before birth and

try and prevent people on the autism spectrum

from being born. I think that is something

that is going to cause a lot of alarm for

certain parts of our community. I just do not

know if we want to necessarily call that out.

DR. AMARAL: I think that this is really

important. I think nobody really has the

solution to this yet about exactly what

information should be handed out and how it

should be handed out. But as we get more and

304

more into these very comprehensive genetic

surveys, not only are there going to be genes

implicated in autism, but in long-term

diseases, cancer and all kinds of other

things. I think people are just now trying to

figure out exactly – certainly, there are the

implications that you say, but there are also

implications for lifetime health that the

families have to take into consideration.

I think if we stick our head in the sand

and say we are not going to deal with this

issue, in the end, families are going to be

hurt by that because potentially they are not

going to be getting valuable information that

will be to the benefit of their children.

DR. REICHARDT: I just wanted to say

genes identify targets, which alleviate

phenotypes that I think almost everybody

would find discomforting whether it is

305

gastrointestinal, sleep issues or whatever.

There is a lot of hope from the genetics.

I had one question for David is whether

epigenetics was intentionally disappeared.

Did I miss it?

DR. AMARAL: It is in there in a sentence

or two.

MS. CRANE: Is there a way that we can

word this like gene-targeted therapies or

gene-targeted interventions that will make it

more clear that that is what we are looking

for? Because I agree. I think that genetics –

people on the autism spectrum react to

medications very predictably. If we can find

gene markers for that, that would be great. I

do not think anyone in our community would be

opposed to that. I just want to make sure

that that is what we are clear about.

DR. BIANCHI: The reality is that any

fetus with a sonographic abnormality, it is

306

standard of care that diagnostic testing is

recommended, which is usually later gestation

would be an amniocentesis. If there is a

fetal sonographic abnormality, a chromosomal

microarray is considered to be standard of

care. Those microarrays routinely identify

areas of variation in the genome that are

associated with ASD.

Again, I do not think we should stick

our head in the sand because part of our

responsibility is to help identify an

evidence base of accurate information. There

is a lot of misinformation out there. By

avoiding the issue, you do not want to allow

practitioners who do not have accurate

information to give inaccurate counseling.

That is my concern.

DR. REICHARDT: She is suggested a

solution.

307

MS. CRANE: I cannot even remember what I

said anymore. I am sorry. It has been a very

long day.

DR. AMARAL: The implications are that

some of the mutations that are observed may

actually have long-term implications that a

family has to be aware of. I think this is

trying to emphasize that we need to come up

with guidelines about how to present those

data. I think everybody is struggling with

this.

I really do not think it is intended and

I am happy to have it changed to a way that

makes it more palatable, but it is not

intended as something that would say let's

eliminate this individual. It is like how can

you inform a family who is not a genetics

knowledgeable family of implications of these

findings that are going to be coming out.

308

It is daunting because I know that the

best people in the world who are doing this

do not really have a solution yet about how

to do it.

MS. CRANE: And the question is how are

we going to capture that nuance in just this

one sentence. I do not know if it is even

possible to capture that nuance in this one

sentence.

DR. BIANCHI: I think what you want to

communicate is the need for an evidence base

to provide data on the complexity of ASD risk

genes to allow provider education and inform

family discussions.

MS. CRANE: I do not think that that is

enough. Frankly, we have seen this in a lot

of parts of the disability community where

simply being accurate about whether or not

this is a real risk for ASD or not is not

enough to help people make an informed choice

309

about a pregnancy unless you also inform

doctors about lifespan, quality of life,

services available, examples of people

throughout the lifespan, the full range of

what autistic people feel and say. Frankly,

this has happened in the Down syndrome

community too. This has happened in the deaf

community. This has happened in the dwarfism

community. It is not enough to just be able

to say we are giving people accurate

information about whether or not their child

will have a disability without getting into a

larger discussion about what it means to have

a disability. That is not going to be

necessarily captured in genetic studies.

If we are talking about this as a

specific goal that we want to commit our – I

am not saying people should not have

information, but if we are talking about one

of the things that our community needs most

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is resources spent towards identifying these

genes so that people can have prenatal

counseling then that has implications for

whether we value that – I am losing my train

of thought. It has implications for what we

are saying about people across the lifespan.

It is a really sensitive issue. I do not

think that we can just boil it down to spend

a lot of money, get the science, tell parents

and let them make their own decisions. I

think it is going to be a lot more nuanced

than that.

DR. AMARAL: Just to maybe to cap this

off and I take your points. I understand what

you are saying. The primary portion of that

sentence is understand the causal

relationship between identified risk genes

and clinical outcomes.

I think the goal is to know if you have

a particular gene mutation. What is the

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likelihood that you will have a particular

outcome, which is really hard to say now? It

is almost impossible to say. Until we

actually have more clarity on the cause

effect relationship, we do not really know

how to communicate that to the families. Does

that make sense to you? That is where we are

aiming for. That may be a decade away. I do

not know.

Once we actually have the cause effect

relationship established then I think there

is a whole other discussion that you are

illuminating about does it make sense, does

the society want us to actually convey that

information. We are not there yet. I think it

is really important to actually be able to

establish the cause effect relationship if

there is one.

DR. BIANCHI: My point was only that it

has already happened. I just want you to have

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that reality check that it is already

happening and it is not necessarily accurate.

That is where I am coming from.

MS. CRANE: Amy, I think that one of the

things is that we are talking about a goal

and we are trying to reach consensus on this

goal. What I am hearing is that we do have

consensus that we probably want to know what

genes do. I do not think anyone is objecting

to wanting to know how genes affect people.

We want to educate providers about what

genes do so that whatever information we

have, they are going to conveying it

accurately to individuals and their families.

I am not sure that we can come to consensus

on wording about genetic counseling in

particular that will fully address the

concerns of the disability community and the

concerns of people who want to improve

genetic counseling. I think that we can

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probably just include that and say we want

accurate information on what genes do and

leave it at that.

DR. DANIELS: Kevin and then Linda.

DR. PELPHREY: -- complicated discussion.

I was kind of applying the same criteria that

David applied to in an earlier one. I thought

it was a really good criterion. What does

that bullet point tell us to do? It does not

tell us much that currently we have the

technology to do unless we – with a causal

relationship part unless we can

experimentally modify the ASD risk gene in a

human and look at clinical outcomes. The rest

of this discussion can be placed on hold. I

think there is a feeling I am getting – see

both sides of this where it is – maybe this

one is not ready for prime time and the other

two do a great job of fleshing out Objective

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1 for a year and then this third one just is

not there yet.

DR. DANIELS: Perhaps what we could do is

we could end after clinical outcomes and the

rest of that – maybe if there is a statement

about that there is still discussion about

what should happen in terms of genetic

counseling and put that somewhere in the text

and not as a part of the objective.

DR. PELPHREY: And take out causal. Once

you start having a clinical effect as pointed

out, epigenetics, you start having feedback

onto the genetics. I am not sure what causal

means there.

MS. CRANE: The final sentence of that

thing too. I think that that can stay in

understanding parental concerns and

attitudes. I think that is important as well.

DR. BIRNBAUM: I was going to make that

comment, but I do want to point out the fact

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that this is also the objective and risk

factors where we talk about the environment.

There is beginning to be data that shows that

the outcome is going to be very dependent,

not only on the genes, but on the exposures

that occur. And that is where we will have

real opportunities I think in the future

rather than actually changing genes, for

example.

I think that the suggestion and I think

in a sense, Kevin, that you made and, Sam,

that you made, which is go back to Objective

1 is just stop after clinical outcomes. I

think I am okay with the causal relationship,

but then go on to understanding parental

concerns when communicating complex

information and just leave out the counseling

at this point. How do you feel? Because you

say people are getting counseling now.

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DR. BIANCHI: I think it is fine as long

as you are understanding. I think that gets

at the issue of developing an evidence base,

which is what I am concerned about and then

understanding parental concerns appreciate

the situation for perspective parents. I

think that would be fine. I do not even need

the causal.

DR. PELPHREY: Can we change causal to

complex because genes do not cause outcomes?

Genes cause proteins to be developed, which

cause complex --

DR. DANIELS: It sounds like you have

come up with some pretty good solutions for

this one. I think that we can make those

changes. Did you have something to add?

DR. SHAPIRA: Just a comment. I think

that this goal, this statement is broader

than what has been brought up with regard to

prenatal genetic counseling. Most of the time

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that a genetic testing is done is the child

already exists and is having some symptoms of

autism spectrum disorder and has genetic

testing done and there will be something that

comes up in the micro-array or some SNP test

or whole genome sequencing and so on. The

counseling for the family is to best

understand the relationship between the

mutations or the variants that are identified

and what might be expected for the child's

phenotype and are there then interventions

that can be utilized. We do not have enough

information about the relationships between

the variants or the mutations in many cases

and the phenotypic outcomes that one might

expect.

When I read this and I understand the

point that Diana made and what is being done

in the prenatal realm, but I think in the

pediatric clinical genetics realm, it is

318

really the genetic testing and counseling the

family about what does it mean to have this

variant. And there is not the population of

providers who best understand how to do that.

I think that this is really looking more at

that lane as oppose to the prenatal although

the prenatal is a part that we have to

acknowledge exists out there. I read this

quite differently.

DR. KOROSHETZ: I was involved in the

first genetic testing for Huntington's

disease. The key part of that was to

incorporate really informed genetic

counseling. That was not prenatal. That was

people getting their own diagnosis. The fear

among the community was that this genetic

information would be given without

counseling. The guidelines for the counseling

are incredibly important I think if genetic

information is being released. I kind of get

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Sam's point, but I do not think that the

concern is strong enough to take out that

genetic counseling piece. I think you are

assuming something that may not be the main

picture and the counseling is absolutely key.

DR. AMARAL: I want to just say that both

of these comments are really important in the

discussion in the work group and actually the

example that came up was the CHD8 mutation

that is highly penetrant in producing autism.

The reason that this verbiage was put in is

because a lot of the individuals that have

mutations that that gene go on to have colon

cancer.

How you express that you have a mutation

because you come in as a patient with autism

is really important for the families to

consider their medical management. Then you

want to have much more persistent

surveillance.

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DR. GORDON: I apologize because I just

came in, but I understand we have been

talking about this for about 15 minutes. I

want to refocus a little bit. What we are

trying to do is approve the language that is

there. Although I appreciate the nuances of

the difficulty of what we are talking about,

I think we can all agree that understanding

the causal relationship between genes and

clinical outcomes and using it to inform

guidelines is something that is a valuable

thing to do.

DR. WEXLER: Without taking a position on

counseling or not counseling, I think the

point was made is that it is being done and

the exemplars that were given, the critical

nature of it being done. I view the IACC as

it is supposed to be helping to coordinate

research related to autism. Running grants

myself, this is a public statement to folks

321

who are applying for grants as to what is

important. If there is a value to counseling

within especially NIH then excluded it – I do

not know if that is the message that you want

to send because you might actually have

people applying for grants to explore how to

best interact with parents whether prenatally

or postnatally based on whatever genetic

findings happened to be found.

From an organization standpoint and from

a functional standpoint of what this

strategic plan is supposed to do, I think we

need to think about messaging.

DR. GORDON: It is strategic plan for

research and care and services. This is an

Interagency Autism Coordinating Committee. I

would like to take a vote on this issue. I

would propose that we vote on whether the

language as currently written is adequate for

the committee. Do I have a motion? Do I have

322

a second? All in favor? All against? Anyone

on the phone against? Anyone abstaining? The

motion carries. Let's move on please because

we have a lot more to do on the strategic

plan.

I do not mean to minimize. I am glad

people felt like they had the opportunity to

object, but I think it is clear that – if not

a consensus, at least a majority --

DR. DANIELS: Earlier, I did not hear a

lot of other comments on Question 3. Is it

okay to move on to Question 4?

There were some feedback I received on

Question 4, talking about wanting to see a

little bit more in-depth review of progress

on drug treatments and new opportunities

arising from advances in neuroscience,

discussion of novel therapies for the future

such as stem cells, a more robust discussion

about key issues involved in things like

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RTMS, a more robust discussion of combination

therapies, which was discussed quite a bit in

the working group calls, but it is only a

short portion of the text. And ensuring that

interventions include the whole spectrum and

diverse population, which was discussed by

the group, but may have gotten a little bit

lost as we edited it down. We could try to

put that back in. Those are some of the items

that were identified for me so far.

Are there additional items or do we need

some discussion on some of the things that I

just mentioned?

DR. AMARAL: If I can quickly say, Susan,

that all those items I think will need some

substantial revision because I think the text

as written does a really good job in terms of

handling behavior therapies and all aspects

of that. But, again, just in terms of what

this document is supposed to do. It is

324

supposed to be leading the way for research

over the next five years or so.

You get the sense when you read the

document that there are not any

pharmacological treatments or that

pharmacological treatments are not going to

be used in conjunction with behavior

therapies. I think what we need to do is

actually highlight the fact that this is a

real big gap. We need to invest more

resources and trying to figure out how to do

this.

One example is stratification. A lot of

drug trials failed because they are not

adequately stratified. Either they are

stratified based on endophenotype or they are

stratified on genetics or something. I think

we should highlight the fact that

stratification of the autism population.

Everybody knows it is heterogeneous, but it

325

does not seem to come into play when people

are designing treatment trials or drug

trials.

I will stop there because I know we are

short of time. I would like to see some

substantial oomph to the biology side.

DR. DANIELS: And we do have resources

within the committee. Geri Dawson could help

us with the stem cells. We have Rob Ring on

the committee who could help us. There may be

some others here who would like to contribute

to that.

DR. MANDELL: Paralleling what David

said, on the behavioral intervention side is

an excellent, well-written summary of what we

know now. But I do not get from the summary

what the gaps are in behavioral research.

Perhaps because of this, this is leading to

objectives that are pretty – it is not that

they are vague. It is that they are very

326

broad. The only place where they are not

broad is in technologies. I found it weird

that we have so many gaps in behavioral

treatment, in pharmacological or biological

treatments in their intersection. That is, do

medications potentiate learning so that you

would see greater response and longer-term

response to behavioral treatment? I liked a

lot the piece on markers of treatment

response, more sophisticated markers of

treatment response. That part I thought was

in some ways the best part of this section.

But it did not make it – that stuff does not

line up in my mind with exactly the way that

the objectives are written. I know that that

is a heavy lift and probably not for

discussion now. I understand if people feel

like we need to move forward. But in keeping

with the spirit of this, this is going to set

the proposed research agenda for the next

327

handful of years. I do not think we have

directed people enough.

DR. DANIELS: Perhaps in the revision

process, we should rethink the objectives to

be a little bit more specific about the next

steps and where we need to go.

DR. REICHARDT: I just would like very

briefly is my own thinking about this is I

think we need ways similar to what is being

done in cancer to basically direct drugs to

the specific areas where they are needed

given the complexity of the brain. I see that

as a big gap.

DR. GORDON: I would echo that from NIMH

perspective.

DR. AMARAL: One final comment is that

the issue of biomarkers of treatment outcome

I think is an incredibly one. It was a lot of

enthusiasm. I understand the enthusiasm for

the studies that have been done, but there

328

are only less than a handful of studies that

have really looked at biological biomarkers

of treatment outcomes. This is an important

area and I think it has to be seen as a

remaining gap so that we can put some more

effort into it.

DR. DANIELS: I think this feedback is

very helpful. It seems like this chapter

probably could use some more substantial

revision. I think that based on these

comments unless there is anything else that

we have not covered could guide us on those

steps. If it is okay, let's move to Question

5, services.

The question now is what kinds of

services and supports are needed to maximize

the quality of life for people on the autism

spectrum. We have three objectives. Does

anyone have substantive comments on the

content of this chapter?

329

Not hearing any, I think that is a good

sign. It sounds like maybe people felt this

resonated pretty well with thoughts of the

overall committee.

The reducing disparities in access and

outcomes cover a number of different areas.

That has been a high priority for the

committee over the years and is highlighted

in Objective 2.

If there are no comments on this

section, can we move to Question 6? Lifespan

issues. How can we meet the needs of people

with ASD as they progress into and through

adulthood? We have three objectives here. Any

comments on Question 6?

In the second objective here, it focuses

some attention on co-occurring physical and

mental health conditions.

DR. GORDON: Also, I would emphasize

given some of the comments today from the

330

public and from our speakers to create

programs – train more general physical and

mental health. Providers are important.

DR. DANIELS: And suicidality is

mentioned here.

DR. MANDELL: This was a great chapter.

This was so thorough and covered so many

issues. I really like how the objectives are

tied very much to the background.

The only question I have in the

objective is about the need for a prevalence

study in adults with autism. Unless we think

that the prevalence has changed over time, it

seems like the bigger issue is identifying

adults with autism and making sure that they

have the services they need rather than

conducting a prevalent study, which is really

two very different studies.

MS. CRANE: I lobbied for the inclusion

of a prevalence study. I do not think that

331

the incidence of autism has changed over

time. However, it is a live debate. It is

something that people have been arguing over

quite a lot. It is, therefore, something that

I think we need a study on in order to settle

that question.

It is also something that policy

advocates end up needing in order to identify

the scale of the need for services directed

at autistic adults. We need to know exactly

how many people there are out there.

I agree we really also need studies on

identifying autistic adults and developing

better measures that will enable clinicians

to identify autistic adults. I think we need

both.

DR. DANIELS: I think the identification

of autistic adults is in there, but we could

go back and check. Just make sure that we

have captured everything that you mentioned.

332

Anything else in Question 6? Not hearing

any, I am going to move to Question 7 on

infrastructure, surveillance, workforce

needs, and outreach. Because there are four

different topics there, we have four

different objectives, each to cover one of

those topics. And the question is how do we

continue to build, expand, and enhance the

infrastructure system to meet the needs of

the autism community. Were there any comments

on this section?

In this objective, this is where

surveillance to understand the needs across

the lifespan is mentioned specifically in an

objective. There is a discussion of the need

for surveillance studies that cover the adult

population.

I am not hearing any here either. If it

is okay, we will move to the next thing,

which is – just very quickly, you have

333

already approved the duplication of effort

statement. Just checking back to make sure

nothing has changed about that. We already

went over it in January and you have made

edits. I think that that is fine unless there

is anything else.

Then I am going to move to the ASD

research and budget recommendation. This is

an area where we will need a little bit of

discussion. We talked about this at the last

two meetings that the strategic plan is

required to have a budget recommendation

attached to it. We discussed that there would

be a separate research budget recommendation

and services budget recommendation, but at

this point in time, we are not ready to make

the services budget recommendation because we

have discussed with David Mandell of doing a

study. Our office has been in communication

with him about getting him the data and

334

resources that would be needed to conduct a

study that would give us the information to

do this. That would be for a future strategic

plan update.

But in this one, we do have the

information to be able to make a research

budget recommendation. The OARC staff has put

together a set of slides to try to help us go

through this and hopefully make a decision on

how we want to do the budget recommendation.

I am not going to take the time to go

through this, but part of the rationale

behind some of this is talking about some of

the costs of autism, including loss of

productivity due to things like

underemployment and family caregivers needing

to stay out of employment to help with family

members. I will not go into that in great

detail, but this is just some rationale and

background that we put in the narrative.

335

We wanted to go back through historical

data since OARC has been collecting data on

research funded by government and

nongovernment funders since 2008. The first

figure here shows combined federal and

private autism research funding and we also

track this in constant 2008 dollars to see

how much purchasing power we have lost over

time. When adjusted for inflation by using

constant 2008 dollars, the growth in the

combined federal and private autism research

budget from 2008 to 2015 is 31 percent, an

annual growth rate of 4.5 percent compared to

an annual growth rate of 7.7 percent if you

are just tracking it in regular dollars. This

information helps us understand where we have

been losing some of our purchasing power.

You have objectives now. I am not going

to go through this. But we do have an idea

from the committee of what are the important

336

areas where we need to invest for the future

of autism research.

The office taking this data came up with

four options for how we could project an

estimated budget. We could do Option 1, which

would be to maintain a steady rate of growth

in the research budget based on historical

data. Option 2. We could recoup dollars that

have been lost to inflation since 2008.

Option 3 is to return to the historical high

of 2010, which was due to the American

Recovery and Reinvestment Act. Option 4 is to

significantly grow the autism research

budget. We have four slides here to give you

an idea of what this might look like. I am

going to have Karen Mowrer from our office

talk through these.

DR. MOWRER: I will try to be brief, but

these are just examples of each of those

options. This is what it would look like if

337

you extrapolated the annual rate of growth

that we saw from 2008 to 2015 into the

future, which is a 7.7 percent annual growth

rate. There, you have seen we have

extrapolated that out to 2020, but could talk

about what year we might want to do that too.

This is what it would look like to

adjust for the loss of purchasing power due

to inflation. To negate the loss of

purchasing power at the 2015 funding level,

you would need approximately $402 million to

be equivalent to that $343 million in 2008

constant dollars. Again, what year would you

want to target to reach that could be a point

of discussion. You can see that it is also

somewhat near the amount of the 2010 high of

$408 million.

And then this is the scenario of

returning to the 2010 peak funding level.

Again, that was reached because of the

338

supplementary funds provided by ARRA. You can

see this is an example. We have shown what a

steady rate of increase would look like

through 2020 to reach that level. That is a

3.6 percent increase per year if you go to

2020 to reach that.

The idea is if we used this model, you

could refer back to ARRA and how a lot of

those projects were really poised to be

funded when that money was available and

point to some of the outcomes that came from

that funding as an example of a new infusion

of funding was provided how the field is

similarly positioned to capitalize on that

investment.

And then this is the fourth option where

we look at the idea of doubling the budget

and picking a timeframe for doing that. This,

again, is an example going out to 2020 and to

double the budget by then. That would be a

339

14.85 percent increase per year to reach

that.

DR. DANIELS: Thanks Karen. These are the

four options that we have come up as a way to

do this, working back from historical data.

Louis, do you have a comment?

DR. REICHARDT: I just had a question of

whether it is possible to do a fifth option,

which is calculate what the inflation rate is

for the real cost of doing science. We know

that the equipment that is needed to do

state-of-the-art science is constantly

evolving, constantly become more expensive.

My impression is for that and some other

reasons that the rate of inflation in some is

actually somewhat greater than the cost of

living.

DR. MOWRER: We actually used for the

adjustment for constant versus actual dollars

of BRDPI, the Biomedical Research and

340

Development Index, which is inflation for

research specifically that NIH uses.

MR. ROBISON: Can you explain to me how

the budget choices that you just showed align

with the stated desires of the president to

cut the budget of NIH and my absolute absence

of knowledge about how our Congress and

Senate use what we should be budgeting for? I

hear so many different things. I do not know

what to make of that.

DR. DANIELS: In terms of the process of

the IACC, your job is to look at the

opportunities for research and decide if you

were going to be projecting a budget

recommendation, what that would be. It is

kind of independent of what government bodies

might be doing or what the Congress may end

up doing in terms of appropriations.

341

MR. ROBISON: In our report to Congress,

we would give them these four choices or

would we choose --

DR. DANIELS: You would choose something

or we would have to have a scenario to

suggest this would be a budget recommendation

coming from the committee. In the past

strategic plan, we had an individual budget

recommendation for every objective, but these

objectives now are so broad that it makes it

a little bit difficult to do that. That is

why we decided to go with something looking

at the entire research budget as a whole.

MR. ROBISON: Do you folks, as NIH

insiders -- do you know what the right answer

to this is with government now or is it

entirely up to us? I do not know what --

DR. DANIELS: You are an independent

advisory body. You have a chance to think

342

about this, debate the merits, and come up

with your scenario.

MS. CRANE: They are not going to

necessarily listen to us. But what we have to

do is just make a recommendation.

DR. DANIELS: This will be something that

funders read that Congress will read and take

into consideration with all the other

consideration they need to account for.

DR. REICHARDT: I would just say in that

context, I think it is crazy not to be

aspirational. The opportunities in research

are very high. We certainly will not get the

funding that one expects, but one should at

least make the case considering the huge

number of opportunities in neuroscience.

DR. GORDON: I think it is fair to say

that if we did everything in this plan, the

cost would not be $685 million a year. It

would be 2, 3, 4, $5 billion a year. That is

343

a big range because we obviously have not

done the calculation. It would be very

challenging to do the calculation. But it

would be fair to say it would be a lot higher

than $685 million.

That statement needs to be made for two

reasons. One, we do not want to give the

impression that whatever number we pick, that

that is enough to do everything in the plan

because it is not. Number two, if we tell

them this is how much you need and we do not

put that in there then they are going to

expect us to do it if they give it to us or

they expect us to do half of it if they give

half of us to it. I think that is an

important thing I would put in there.

DR. BIRNBAUM: For those of us who are

federal members, we cannot tell Congress what

to do, but the committee can. But I think it

is very important to understand that in the

344

last few federal budgets, which have come

from Congress, in fact, NIH has received

significant increases, but they have been

largely set for specific areas, which in the

past was something that NIH did not want to

happen, but in fact that is what is happening

so that BRAIN gets specific funding.

Alzheimer's gets specific funding. Precision

medicine gets specific funding. If this group

should decide to recommend a large number, it

is possible that someone in Congress will

agree that that should be some specific

funding.

DR. WEXLER: I do want to remind folks of

when Tom Insel and our Assistant Secretary

and the GAO inspector went before

congressional committee and Tom was being

badgered about duplicative research and this

committee is certainly familiar with it.

345

One of the things he did was he turned

around to them and he said how much are you

spending on AIDS and how much are you

spending on Alzheimer's. You are talking

about 1 in 60 births a year now. They did not

know, but he did. I am not from NIH, but it

was in the billions. I would agree with Dr.

Gordon.

DR. GORDON: I can give you some of those

numbers. The expenditures on AIDS are about

$3 billion per year. The expenditures on

Alzheimer's are now 1.2 and are projected to

go up to 1.6 if the House Budget is passed.

DR. BIRNBAUM: It is likely it might even

go higher with the Senate.

DR. GORDON: That is just for reference.

That is per year.

DR. WEXLER: I would agree with Louis

that aspirational is not a bad idea.

346

I also will say on the other side from

what I have heard is that they are talking

about putting limits on indirect costs as

part of research grants.

DR. BIRNBAUM: At last in the House Bill

that is explicitly blocked. The House says

you will not cut indirect costs.

DR. WEXLER: At this point. All I am

saying is that dollar amounts are very

relative. If it is a 25 percent indirect

versus 50 percent indirect, the money

stretches a lot farther. I just raise that

just as something to – you say it will never

happen.

DR. BIRNBAUM: I am not saying it will

not happen, but cutting indirects will not

cut the cost of research. It will just mean

it has to come and be described from directs.

347

DR. WEXLER: I understand that, but I am

just saying that when you represent dollars,

it is actual dollars that you can --

DR. GORDON: I do want to focus the

discussion back because we do have to pick a

model. John, go ahead and say something. Keep

it brief.

MR. ROBISON: If I am understanding you

all correctly, it sounds to me like our

committee should make a statement in our plan

that we have changed our aspirational goal

with this revision of the strategic plan in

recognition of the fact that we need a two-

forked thing. One, the basic science and two,

the delivery of benefits to the community now

and that we do not have the funding to

accomplish that expanded goal. That is a

reason that we need specific targeted funding

well over and above what we previously have

had because that is a change in this version

348

of the plan. If I am hearing you all right,

we need to make our specific wish clear so

the Congress or the Senate has a shot at

giving us what we need. That is how I am

hearing you all.

DR. GORDON: Thanks John. Let’s just say

that there are four options on the table. I

do not mean to distinguish another one. But

there are four options on the table right now

that Susan has put forth, this being I think

the most ambitious, the doubling in five

years, and the least ambitious being to

continue the current rate of growth. Is that

correct?

I would like now the discussion to be

confined to either a concrete suggestion of

some other method or argument about one of

the four methods that we discussed.

349

MR. ROBISON: I am suggesting her most

aspirational plan, doubling five years,

justified --

DR. GORDON: I see people nodding. Do we

have a motion to approve that?

DR. DANIELS: Do we have a timeframe you

want to put on that? We just arbitrarily

picked five years, but it could be four

years. We also started with 2015 just because

we have the 2015 data. We could start in

2016, but get to a doubling faster depending

on --

MR. ROBISON: Why don’t we ask for three

years in this President's term? That makes

sense to me.

DR. REICHARDT: I would recommend the

doubling and I would recommend five years

from last year.

350

DR. GORDON: That is the current plan,

five years from last year. I had a motion. Is

there a second? All in favor? Any opposed?

DR. WEXLER: We are making up numbers.

Double seems like a great idea. Maybe it has

more face validity than triple, but triple

has more face validity than quadruple. I

think the concept of sometimes you get what

you ask for. You could always not get it or

maybe someone says there is a middle ground.

They asked for triple. We will give them one

and a half.

DR. GORDON: Since we had another

argument, let's just re-do the vote. All in

favor raise your hand? We are voting on the

current plan, the doubling. If it is fails

then we will have to figure out another one.

I am personally going to abstain because

quite a lot of that funding is going to come

to me. We are committee members. You can make

351

up your own decision. I am going to abstain.

A substantial chunk will go to you and – you

have to make up your own minds. We are a

member of the committee. We are voting for

this proposal currently. Larry has made a

more ambitious proposal. Who would like to

see all in favor of the doubling in five

years in 2015? Raise your hand please. All

against? Everyone else should be then

abstaining.

DR. FARCHIONE: Once you pointed out

about federal employees.

DR. GORDON: I do not think we can pass

it.

MS. CRANE: Maybe we should vote on the

ambitious proposal first. The triple.

DR. WEXLER: Could I just say in terms of

federal employees, me being one of them, we

are not allowed to recommend to Congress.

This is an independent body's just general

352

here is what we think would do the job. I

will abstain too.

DR. GORDON: Let's be very clear. We, as

a committee, including the members of the

committee who are agency representatives,

have been asked to tell them how much this

will cost.

DR. DANIELS: When you are voting on

this, this is a part of the overall strategic

plan. It is not going to be like there is –

when the strategic plan comes out, there is

going to be a list of names of who voted for

this particular section. It will be a part of

the whole. It is fine for people to abstain.

Federal members are permitted to vote, but

you are also permitted to abstain if you feel

like you need to. Keep in mind that we also

have several public members who are missing

today.

353

DR. KOROSHETZ: The previous questions

like this we went to the legal people at NIH

to ask this question. And the official answer

is that appointed to a FACA committee, you

can exercise your right as an individual to

vote your conscience. It does not officially

go for advocacy.

DR. BIRNBAUM: And we are officially

representing our institutes.

MR. ROBISON: Isn’t it true that all of

us who are not federal employees would wish

for the maximum allocation of federal dollars

to address our concerns in autism. Can't we

get agreement with that around the table? If

that is true, don't we want to vote as the

independent part of this for the largest

thing that Susan has put on the table? Can't

we move ahead with that?

I guess I sense that we are stuck with a

procedural thing where the folks we depend on

354

at the end of the table cannot speak up

because of their federal status, but we want

the biggest thing we can get. Do any of you

not want that who is independent? You all do.

Tell us how to do that, Susan.

DR. GORDON: I think she is giving you

four different plans.

DR. DANIELS: These are based on

historical data. They are not just pie in the

sky. There are some facts to back some of

this up, but we just need to make a choice or

offer an alternative.

MR. ROBISON: May I make a motion? Susan

has given us for thought through plans. She

cannot say more, but those are thought

through plans based on our collective work.

May I suggest we put our votes for the

largest of those plans?

DR. GORDON: All in favor, raise your

hands. Any opposed?

355

MR. ROBISON: We have done it.

DR. KOROSHETZ: Just for the record and

there are people who may be on the phone, I

think all the federal folks believe that with

the highest model here that we could make

very good use of the money.

MR. ROBISON: I do not doubt it for a

second. I have absolutely no problem of

conscience asking for money --

DR. GORDON: We are going to put forth a

budget recommendation that will be this

model. It will have the following two

statements appended to it. One, that this is

not enough money to do everything in the

program, but it is a reasonable and

aggressive start. I think Walter said it

better than one. Hopefully, someone took

notes when he said it. That we can spend

wisely and efficiently over those five years.

356

MR. ROBISON: I am happy to go on record

as being the person who made the motion and I

am not a recipient of the money. I have no

dog in the hunt other than being autistic.

DR. DANIELS: That was the big one for

the strategic plan. These are some other

questions that I had for you regarding

additional funding, but you do not really

have to answer it. You can just stick with

the budget recommendation and let it be. Let

me just pose it. Given the current

distribution of funding across the strategic

plan, I did not know if you want to think

about the balance of what is in the strategic

plan. And should additional money come to the

autism budget, should it be spent in a way so

as to shift the balance? You are free to say

we do not want to talk about that or if you

think that you need to make any statements,

we can include it in the narrative.

357

MR. ROBISON: I think it should shift to

lifespan and services because we have made

that change in our strategic plan this year

that we need to ramp up our deliverables to

the community and those are the areas that

cover the deliverables.

MS. CRANE: I absolutely agree on that. I

think it is important to note that even

things that would otherwise belong in other

questions, things like research on health

outcomes, health issues for adults, research

on screening for adults, research on risk

factors, treatments and interventions for

adults, all of the things that pertain to

adults get put into Question 7 or many of

them get put into Question – Question 6. I am

sorry. I cannot count anymore. As a result,

it is really a problem that even though most

of us spend the majority of our lives over

358

age 18, only 2 percent of funding is going

towards our needs.

DR. TAYLOR: I think if we want to

increase our funding for things that give us

deliverables, we may also then want to enter

into that Question 4 too so treatments and

interventions just more general. Even though

that is a bigger slice of the pie right now,

those things sort of hang together in terms

of the three questions that are really

focused on turning things around fairly

quickly in terms of what can we do for

children and families and adults sooner

rather than later.

DR. GORDON: I am good to go on record as

being against any specific recommendations

about balance. And the reason I am going to

do that is because I think it is hard to

know, number one, what good science will come

in and which categories and what

359

opportunities there will be. It is easy to

say we want to fund more things on lifespan.

We are doing a good job of increasing the

number of applications at least at NIMH that

come in with regard to lifespan through

targeted announcements. But it is hard to

know whether that will continue and how much

that can grow.

My own preference would be to keep any

recommendations rather general. I do not have

a problem with saying that picking out

lifespan and services and interventions

research as areas that could grow. But I

would be wary about making two specific

recommendations about this.

DR. MANDELL: I think there is a lot of

value in the plan that you just proposed. One

area that is particularly concerning to me is

that I think one of the reasons we do not

have more funding in those areas is we do not

360

have more good scientists in those areas and

incentives for scientists to go into those

areas. I would at least like to think about

how we could include language that would

relate to what is in Question 7 around

developing the science workforce, not just in

autism broadly, which is certainly needed,

but in these specific areas, which I think

will do as much to enhance the science as

specific RFAs or PAs in those areas.

MS. CRANE: I can understand that we do

not want a very specific dollar amount for

any one area. But I hope that we can all

agree that 2 percent for all research

pertaining to adults including services

research, including treatment research,

including risk factors, screening and

diagnosis research, almost everything that

has to do with adults, which is all in this

question. Two percent is just completely

361

unconscionable, given the number of people

who are adults or who hope to one day be

adults in our community.

DR. KOROSHETZ: I kind of agree that the

2 percent is not defensible. We need to say

something about that this really requires

resource growth.

DR. DANIELS: We could maybe make a

statement in this budget section, which we

have worked on a draft narrative. We could

add something about it with an emphasis

toward translational research, especially in

intervention services and lifespan issues.

DR. TAYLOR: I do not know how specific

we want to get, but we could potentially give

examples like the ASD mechanisms – I think of

a couple of researchers that I know of who

were childhood intervention researchers who

developed programs for transitional youth or

adults because there was a mechanism there

362

for that and kind of drew them into this

area.

DR. GORDON: This data is 2015 data,

which is before the adult announcements in

funding. I am sure that number has already

gone up. I do not know by how much, but I am

sure it has already gone up. It is a good

point. Two percent is indefensible. I am not

trying to defend it, but it is important to

recognize that Questions 2 and 3 though they

are not about adults specifically, obviously

impact adults. But still even with that, I

will grant you. Two percent is too low.

MS. CRANE: When we have been talking

about which studies go in which question, if

there is a biology study that is specifically

on adults that often ends up being put in

Question 6 rather than in Question 2. I think

that is fair because we need to track which

studies are on adults and if we do not track

363

that in this way, we are not going to be able

to get an accurate number. I do not think we

can assume that the other categories are

somehow secretly about adults.

DR. DANIELS: We are tracking that. In

fact, with the data system we are developing,

we are going to be able to track it even into

a finer level than we can now. I think that I

have heard good information here and we have

what we would need to do revisions.

If there are further comments on the

strategic plan, I requested that you give us

written comments by Friday, August 4. In

terms of a process, what I would propose is

OARC taking all the written comments that we

receive by August 4, incorporating them into

a draft and possibly sharing that with the

chairs of each of the working groups to run

that draft through them. And then we could

bring it back to the committee and either

364

take – we could have a phone call to talk

about it if we think we hope that by then we

are in pretty good shape. I am hoping to

avoid having to bring it back for further

discussion in October. I would really like to

finish it up, not just for us, but really to

get the plan done so that we can move forward

on other projects and ensure that the plan is

in place should funding be available. Then

you will have a plan that is ready to go. How

do you feel about that possibility?

DR. GORDON: I see nodding, but I am not

sure what you are nodding to. Let's be

explicit. Susan has proposed that we come

back with a phone call for final approval as

opposed to approving it now.

DR. DANIELS: Or you could tentatively

approve it now with the changes we have

discussed, but you will not have seen the

changes. But I could run it by the working

365

group chairs to make sure that they agree

that we have captured what has been said in

the room. If you feel comfortable with that,

we could try to get it approved now and just

make those changes.

MR. ROBISON: I am willing to approve it

now. I would make a motion that we put our

trust in Susan to do this and we vote to

approve it now.

DR. GORDON: Do I hear a second?

DR. REICHARDT: Second.

DR. GORDON: All in favor, raise your

hands. Any opposed?

DR. DANIELS: Is there any on the phone

because we do not have a quorum with that

number? We need 16. Then we do have a quorum.

Who is opposed? Anyone on the phone opposed?

Anyone abstaining? The motion carries to

approve it with the changes we have discussed

and with the review of the chairs of each of

366

the working groups. Then we will go ahead and

be working on all of those. Please send us

any comments you have. We will incorporate

them, get them back to the working chairs.

You will be hearing from me before we meet in

October. Hopefully, we will have a completed

plan to show you in October. The pretty

version might not be ready yet depending on

how long this takes. But we will at least

have the text all done. Thank you.

DR. GORDON: We have about 17 minutes

left. We are going to skip over the summary

of advances for this time. We will leave

extra time for you to discuss those advances

at the next meeting.

We now have a few minutes any way for

round robin. There were three people who

submitted – there is one other business item

we need to discuss.

367

DR. DANIELS: Our plan was to move to

doing the working groups. I know I have had

committee members ask about when we are going

to get to working groups. I would like to

complete the plan. Would you be comfortable

with us starting the working groups after

October or do you want us to start them in

the fall like before the October meeting?

We have already taken some initial

people to be on the three working groups:

housing, safety, and improving health

outcomes. Would you like to wait until after

we have had the October meeting to convene

the first calls for those or do you want to

start them in September and October before

the meeting? I just need to know so that we

know what to do.

DR. GORDON: If we have the people

already, let's convene them and we will see

368

if they have the opportunity to meet before

October.

DR. DANIELS: Okay. We will be in touch

about that.

DR. GORDON: As I said, there were three

people who submitted beforehand items for the

round robin. We will go with them first. And

then if there is time, we will continue

around the table. Let's not start with NIMH.

We can sacrifice ourselves if we need to for

time.

Jennifer Johnson. She left. Tiffany.

DR. FARCHIONE: I was just going to give

a quick update on the patient focused

strength development meeting that we had at

FDA back in the beginning of May. It was

really interesting and enlightening.

Basically, for those folks who are not

familiar with these meetings, it was a half-

day meeting where we had individuals with

369

autism, their families, caregivers, et cetera

and participated in a couple of different

panel discussions to try to get an idea of

what would be clinically meaningful targets

for drug development in autism spectrum

disorder.

One of the things that was really

interesting was just how different the things

were that those folks said were important to

them versus some of the things that drug

companies are actively pursuing at the

moment.

One example that kept coming up over and

over again was repetitive behavior so

stimming. And the folks who were there

basically explained that they did not want

anybody to mess with their repetitive

behaviors. The repetitive behaviors actually

helped them to feel better and that it was

whatever was distressing or bothering them

370

that was causing the stimming that they

wanted help with, not the stimming itself.

That is just one example.

Also, the idea that just because

something is observable and countable does

not mean that it is something that is going

to change someone's life or make them

function better. One woman basically said the

number of times that I make eye contact with

you during this conversation is not going to

affect how functional I am in my day-to-day

life. That makes perfect sense.

In any case, it really gave us a lot of

useful information in terms of how we, at

FDA, will approach companies who are seeking

new indications in the autism space. If

somebody comes in and says, our primary

endpoint is based on restricted repetitive

behaviors. They are going to say actually

371

that might not be the best thing and maybe

you ought to rethink that.

The end product of this meeting is

something called a voice of the patient

report. That should theoretically if

everything goes well, be ready some time by

the end of the year. But if folks are

interested in that meeting, the full

transcript of the meeting is available online

as well as any slides that were presented. I

believe audio recordings as well. If anyone

is interested, just Google PFDD, FDA and it

should be the first page that comes up.

DR. GORDON: Thank you. Then we have

Denise Pintello from NIMH. She is going to

talk to us about the ASD --

DR. PINTELLO: Thank you. I feel like we

are dessert here. The best for last. I think

it has been a fascinating conversation today.

I would like to cap that off by telling you

372

about a fantastic meeting we had at the

National Institute of Mental Health last

month with scientists from five studies that

are conducting research on early autism

detection, engagement, and linkages to

services.

But before I do that, I want to tell you

a little bit about what the ASD PEDS Network

is and how it came about. And how it came

about is this body, the IACC strategic plan

of last year. I know you are talking about

this year's plan – last time in 2013, it was

framed around seven questions, very similar.

In result of those seven questions, NIMH

created a series of funding opportunity

announcements written by my colleague Denise

Juliano-Bult that responded to the last

strategic plan.

One of those questions, when should I be

concerned, resulted in this funding

373

opportunity announcement titled research on

early identification and linkage to services.

We received a number of applications from

around the country to test the development of

interventions that coordinate screening,

evaluation and engagement and treatment for

very young kids with a special focus on

underserved families. We funded the top five

scoring applications and these studies were

in these different areas across nine

different states and 16 different sites.

Let me just tell you a little bit about

who the researchers are and what they are

doing. Karen Pierce is testing a triple

screen at that well baby checkup. She is

screening at 12, 18, and 24 months and

providing services.

Wendy Stone is focused on rural settings

in the State of Washington. She is testing a

screen, refer and treat model. Emily Feinberg

374

in Boston is doing a comparative

effectiveness study, looking at engagement

and using navigator models. Alice Carter and

her team in the University of Massachusetts

is focusing on early interventions and

looking at a system-level approach and

testing access especially for health

disparities.

And lastly, Amy Wetherby and her

colleagues are testing a large multi-science

study that is looking at online automated

tools, screening tools and testing various

engagement models to enhance the linkage of

treatment and services.

Of course, we had differences. When we

looked at these studies together, we compared

the differences and the similarities.

Everybody had a little bit of both. But when

you took these studies together, we found

that approximately 70,000 children of these

375

five studies would be screened. And if you

look at the CDC data, we anticipate that

about a thousand kids may be diagnosed. We

thought there might be a way to harness all

of these studies together.

In 2014, we invited the researchers to

work together and they eagerly agreed. We

called it the ASD Pediatric Early Detection,

Engagement and Services Network. They also

all agreed to collect data on these four

common measures. They are using them now.

Since the grants were awarded back in

2014, they have met together. They have

formed a website. They are sharing data. They

are translating instruments and sharing that.

They are training each other staff for free.

But the other piece that all of you are

very familiar with that in 2014 since that

time, the US Preventive Service Taskforce

came out. In response to that, a JAMA

376

editorial acknowledged and recognized that

the ASD PEDS network. It is highlighted its

potential in addressing some of the research

gaps.

Since then, we are now in the third year

of their five-year studies. They are in the

middle actively recruiting and collecting

data.

Let me file it to the meeting we just

convened. They have a lot of energy. Folks

here are really committed to quickly

conducting research and getting it out so

kids and families can really benefit from

this.

Four general themes were discussed. The

first one was the impact of parental concern.

The presence and absence of parental concern

really drives treatment seeking and they are

finding various levels of parental concern.

Provider-level concern. The concern of

377

stigmatizing and fear of stigmatizing

families and also weighing that with the

consequences to toddlers when you take a wait

and see approach. They are collecting data on

that.

Treatment tracking. Looking at pathways

from screening to services. Just because

these kids are receiving screening, it does

not mean they are going to get services. The

services may even be available in those

communities, but access is an issue. They are

looking at all those factors.

And the third item is the onset of ASD

symptoms. Two studies are collecting these

data at 12 months. All the others are doing

it at about 18 and 24 and 36 months. Maybe

there could be a developmental typography of

symptoms that they might be able to start

looking and comparing trajectories.

378

Lastly, we have a career development

fellow that is conducting an implementation

project and talking and interviewing, using a

mixed methods approach, interviewing the

researchers to look at facilitators and

barriers to implementation.

I am pleased to report there will be

more to come. Their study should be completed

in the fall of 2019. They will be co-

publishing findings and jointly presenting

some of the major conferences. And of course,

they want to somehow explore the future

studies that could be harnessed within the

cohorts from these networks. These are things

and the discussions we will be having.

Lastly, if this body is interested, we

would be happy to have the researchers come

and present their findings to you some time

in 2019 or 2020. Thank you.

379

DR. GORDON: Thank you. We can go around

the table now if there are any burning

issues. We have just a few minutes left, but

if anyone would like to report on activities.

DR. SHAPIRA: I just wanted to say in two

minutes that – a couple of weeks ago, Dr.

Brenda Fitzgerald was appointed as the 17th

director for the CDC and as well as

administrator of the Agency for Toxic

Substances and Disease Registry that many of

you know as ATSDR.

Now Dr. Fitzgerald has previously served

as commissioner of the Georgia Department of

Health and the state health officer. She is a

board certified obstetrician/gynecologist and

she practiced medicine for three decades. She

has a particular interest in early brain

development, which was one of her priorities

while at the Georgia Department of Public

Health. I think we will continue to see work

380

in that area, a focus of that work at CDC,

which would include autism spectrum disorder.

And then one other announcement. This is

a preview of coming attractions. At the

October IACC meeting, the CDC will be sharing

more about latest research coming out of our

Study to Explore Early Development or SEED

and that is CDC's case control study to

evaluate genetic and environment risk factors

for autism spectrum disorder. More to come on

that this fall.

DR. GORDON: Thank you.

MR. ROBISON: I already made enough

noise.

DR. GORDON: Thank you very much

everyone. We will see you all in October.

DR. DANIELS: October 24. I believe we

will be at the Neuroscience Center in

Rockville. Thank you.

381

(Whereupon, at 5:02 p.m., the

subcommittee adjourned.)

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